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Author Topic: I'm tired of being tired, oh so tired ugh :-(  (Read 2598 times)

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Offline jackfrost

  • Member
  • Posts: 93
I'm tired of being tired, oh so tired ugh :-(
« on: October 26, 2012, 05:59:14 PM »
I am tired all the time, to the point it's hard to function. It's not just general tiredness, I am sleeping 7-8 hours a night. It's a different type of tired than say the type of tired from when I would be eating crappy and not exercising. I am so exhausted all the time. I was doing laundry the other day, and I was winded from walking up the stairs. I had to sit down because it made me so tired and I was short of breath. I've also been having short term memory issues. Twice now I have been driving and all of a sudden I'm in the other lane. I don't know if I drifted into the lane or if I properly lane changed, I have no recollection of moving to the other lane. There are countless examples of my short term memory issues, thankfully most of them aren't serious like the driving one, but still a concern for me because it's really out of the norm for me. I told my family doctor at an appointment last week about the short term memory issues, especially the driving one and his response was "hmm that's really weird, I don't know what to tell you." I also told him about my extreme exhaustion. It started around the end of September, I was feeling a bit tired than normal, which I attributed to just finishing 4 months of group therapy. But it just kept getting worse and worse and then I got the flu - or at least I thought it was the flu. The odd part was I wasn't vomitting and I always vomit when I have the flu. I started feeling better but never felt 100%. Then the exhaustion kept getting worse and worse. At this point all I do is sleep because I am so freaking tired. I am only working half days right now on limited duties, simplified tasks. I work my 4 hours and I feel like I worked a 16 hour shift. I go home and I sleep for 4 or 5 hours and then I sleep my normal 7-8 hours at night. I am sleeping my life away. My family doctor said oh maybe it's your depression. I told him I am not depressed, this is different than depression. When I am depressed I am tired because I hate life and I want to avoid people. I said I don't want to avoid people, I am frustrated because I have no energy to hang out with my friends. I still force myself to go to work everyday even though I am so tired. When I am depressed I call in sick. I said this is not normal, I know my body and there isn't something right. He responded with "well lets put you on an anti-depressant, we'll put you on Celexa, it should help with concentration and the fatigue. At this point I was so frustrated and exhausted I gave up and said fine. I filled the prescription and I've been taking it for 2 weeks. Then in the last week and a half, I have been having diarrhea and troubles breathing. I went to the mall the other day, was only there for an hour and when I got home I was so freaking tired. I was short of breath, and just plain exhausted. It's uncomfortable when I breath in and my chest fills tight. This is definitely not depression lol. Also recently I finally got my Vitamin D and B12 up to normal, I should be feeling better not worse. I also get frustrated because I don't know if it's related to having HIV or not, when I should go to my family doc or my HIV doc. My HIV doc will say things like oh your family doctor should be looking into this or my family doc will say oh your HIV doc can handle this. Grrrrrr

I am writing this more to vent, I am extremely frustrated with my family doctor. I have my appointment with my HIV doc on November 2nd, so I am trying to make it till then so I can tell her everything that has been happening. Hopefully she will take me seriously.

Offline red_Dragon888

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Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #1 on: October 27, 2012, 05:28:24 PM »
Well, I hope you will feel better and that it's something treatable or temporary.  It call be the medication(s) but it's hard to tell since it could be anything.  I would suggest drinking coffee, tea or some kind of stimulant to keep you alert especially when driving, but even those have side effects. Either way, do what you can to stay safe and find the reason or reasons for you fatigue.   

yours,
red 

p.s.  It still could be the flu and you should see a doctor immediately.
« Last Edit: October 27, 2012, 05:29:57 PM by red_Dragon888 »
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline jackfrost

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Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #2 on: October 27, 2012, 10:36:34 PM »
Thanks Red  :)

Offline tednlou2

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  • Posts: 4,760
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #3 on: October 28, 2012, 01:11:16 AM »
I'm sorry to hear you're experiencing all this.  When was the last time you've had a CBC, thyroid checked, etc?  I remember you had some issues around early September, no?  Your electrolytes were out of whack, liver labs off, and an issue with phosphorous??  I think I'm remembering this right, but could be confusing you with another member. 

If you haven't had bloodwork done since this all began getting worse, I would suggest having it all checked out, just to make sure.  I know you don't believe this is depression/anxiety related.  However, I know you've talked about depression and even suicidal thoughts previously.  Depression can really mess with your mind.  If depression can cause someone to have suicidal thoughts, then it can certainly cause the issues you describe, without thinking depression is a factor. 

As you know, it can bring on physical and cognitive symptoms.  I know my depression and anxiety are my biggest issue.  I can be feeling great.  I can get up and walk up the stairs, and I'll get very winded, heart pounding, and breathing very hard--all while breaking out into a cold sweat.  My mind will go to something like a heart attack or pulmonary embolism.  When my anxiety is bad, I must get plenty of sleep.  If I don't, I have a hard time focusing.  I will feel absolutely crappy.  I can drive home, which takes me through a tunnel.  I will find myself expecting the tunnel coming up, when I've already gone through it.  But, I know this also happens with many people while driving.  There's a term for it, but can't think of it.  And, I'll be falling asleep while watching the evening news, without realizing I'm falling asleep.  All of a sudden, Brian Williams will be saying goodnight.  The only way I know I must have fallen asleep is that I missed a story I was wanting to see.  I will rewind it, only to find I fell asleep again.  Then, I rewind it again.   

I'm not suggesting all this is depression related.  I know it is frustrating when you know/believe something ain't right, and people are discounting it as something else.  In fact, I think you should always err on something else being wrong and have that checked out, before considering depression--especially, if you know this is totally different from depression/anxiety.  Again, I would want to have some bloodwork done to rule out anything amiss.  If all that is fine, I would have to consider depression, but HIV can mess with folks that won't show up on any lab report.

All the best on getting to the bottom of this.  I wish you all the best getting this figured out and back to having better energy, focus, and memory.

Offline mikeyb39

  • Member
  • Posts: 921
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #4 on: October 28, 2012, 10:39:45 AM »
Sometimes you just have to tell your doctor what you want instead of letting him make the decision.  i believe you need blood to check you endocrine system, thyroid, hormones etc.

My doc is pretty good with the testing, but there are times where i just have to say 'look i want this test' and he does it. 
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline mecch

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  • Posts: 11,224
  • red pill? or blue pill?
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #5 on: October 28, 2012, 02:27:06 PM »
I am tired all the time, to the point it's hard to function. It's not just general tiredness, I am sleeping 7-8 hours a night. It's a different type of tired than say the type of tired from when I would be eating crappy and not exercising. I am so exhausted all the time.

I was doing laundry the other day, and I was winded from walking up the stairs. I had to sit down because it made me so tired and I was short of breath.

I've also been having short term memory issues. Twice now I have been driving and all of a sudden I'm in the other lane. I don't know if I drifted into the lane or if I properly lane changed, I have no recollection of moving to the other lane. There are countless examples of my short term memory issues, thankfully most of them aren't serious like the driving one, but still a concern for me because it's really out of the norm for me.

I told my family doctor at an appointment last week about the short term memory issues, especially the driving one and his response was "hmm that's really weird, I don't know what to tell you." I also told him about my extreme exhaustion.

It started around the end of September, I was feeling a bit tired than normal, which I attributed to just finishing 4 months of group therapy. But it just kept getting worse and worse and then I got the flu - or at least I thought it was the flu. The odd part was I wasn't vomitting and I always vomit when I have the flu. I started feeling better but never felt 100%. Then the exhaustion kept getting worse and worse.

At this point all I do is sleep because I am so freaking tired. I am only working half days right now on limited duties, simplified tasks. I work my 4 hours and I feel like I worked a 16 hour shift. I go home and I sleep for 4 or 5 hours and then I sleep my normal 7-8 hours at night. I am sleeping my life away.

My family doctor said oh maybe it's your depression. I told him I am not depressed, this is different than depression. When I am depressed I am tired because I hate life and I want to avoid people. I said I don't want to avoid people, I am frustrated because I have no energy to hang out with my friends. I still force myself to go to work everyday even though I am so tired. When I am depressed I call in sick.

I said this is not normal, I know my body and there isn't something right.

He responded with "well lets put you on an anti-depressant, we'll put you on Celexa, it should help with concentration and the fatigue.

At this point I was so frustrated and exhausted I gave up and said fine. I filled the prescription and I've been taking it for 2 weeks. Then in the last week and a half, I have been having diarrhea and troubles breathing. I went to the mall the other day, was only there for an hour and when I got home I was so freaking tired. I was short of breath, and just plain exhausted. It's uncomfortable when I breath in and my chest fills tight. This is definitely not depression lol. Also recently I finally got my Vitamin D and B12 up to normal, I should be feeling better not worse.

I also get frustrated because I don't know if it's related to having HIV or not, when I should go to my family doc or my HIV doc. My HIV doc will say things like oh your family doctor should be looking into this or my family doc will say oh your HIV doc can handle this. Grrrrrr

I am writing this more to vent, I am extremely frustrated with my family doctor.

I have my appointment with my HIV doc on November 2nd, so I am trying to make it till then so I can tell her everything that has been happening. Hopefully she will take me seriously.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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  • Posts: 11,224
  • red pill? or blue pill?
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #6 on: October 28, 2012, 02:39:10 PM »
You must be extremely frustrated by the lack of medical insight.  Not to mention being tired all the time.

You mentioned just being out of therapy. So do you have access to continuing therapy, now?  Is it possible to see a psychiatrist, MD? 

I have gone through some similar periods where exhaustion, psychological issues (depression.. or anxiety.. or others...), HIV medicine, and HIV (MAYBE!) left me bewildered and rudderless. 

I tell you what was important was I had an MD psychiatrist who could talk to the family doctor and the HIV specialist, and I think this helped all three get their stuff together to try different ways to solve my problems.   

If you can't have an shrink do this, then I suggest you explain the situation POINT BLANK to both your GP and your ID.  Tell them you would like them to consult and start giving you treatment to solves some of these issues. Obviously, your job could be in danger!  NOt to mention your social life and general psychological health.  So really, the doctors need to step up to the plate.   


I cut your post in paragraphs to see clearly the different issues.  Why don't you reduce that post, to about 10 sentences, or points, of ways you are not functioning well, and present it to your 2 doctors....


THESE ARE NOT ISSUES to ignore, delay addressing, or poo-poo away with an SSRI and a vague hope.



Feel that out with both of them.  The first one who seems willing to take some initiative, ask him/her to please take active managing control of your treatments for awhile and say how grateful you will be if the doctor will do this.

My experience is that MOST doctors don't bother to think about consultation and coordination, or avoid it, for perfectly logical reasons (to them, their career, etc.) however they may be regrettable for some clients, who need something a bit more "holistic".   

So, my dear, the squeaky wheel is going to get the grease.  Start squeaking, politely, of course, to your doctors, and get some grease. 

Hope that perspective helps a little.

« Last Edit: October 28, 2012, 02:43:31 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MilburnCreek

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  • Posts: 67
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #7 on: October 29, 2012, 11:33:20 AM »
jack, I dont know how old you are, but I had the *SAME* issues, and it turns out I was borderline low testosterone.  Found a Doctor (could refer if you want) that put me on test & hcg.  Life is Good.

Offline buginme2

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  • Posts: 2,834
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #8 on: October 29, 2012, 11:56:31 AM »
I am tired all the time

Me too, I feel for ya. 

It blows, I hope they figure it out for you.

Offline Jeff G

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  • How am I doing Beren ?
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #9 on: October 29, 2012, 11:59:44 AM »
Sleep apnea is something to be looked into when you have these issues also .

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #10 on: October 29, 2012, 01:18:12 PM »
Sleep apnea is something to be looked into when you have these issues also .

Quality of sleep is, I suspect, one of the most under-investigated manifestations of both HIV infection and many of the meds used to treat it. Not to mention the self-medicating, which can also have negative impact on that quality.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline buca45

  • Member
  • Posts: 187
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #11 on: October 30, 2012, 09:52:07 AM »
Interesting I just signed on to tell of my recent experience with severe fatigue, shortness of breath, fainting feeling, etc. or most of the things you are experiencing now.
I was released from the hospital just this last Friday after one of these fatigue episodes that got way worse than it had ever been. I knew inside something major was wrong and with a bit of persuasion from my partner, I went to the ER and told them of my complaints. Although the ER was packed, my name was called immediately and I was led back and was met my the attending cardiac doc.
It turns out my Heart Rate was between 27 - 34 bpm!! My usual is between 50 - 60 (yes I get asked if I am an athlete or runner as only these types have such low heart rates from having healthy hearts. To tell the truth, I have never stepped in a gym nor do I participate in any sort of sports at all. I suffer from a mixture of maladies which do not allow me to over exert myself at all, so any sort of exercise if not on my schedule.
Anyway, I spent half the night in ER waiting for a bed which happened 12 hrs after I checked in. Finally at 3am I got a bed and sure enough at 7am the doc and all of his interns (a teaching hospital) arrived and after going through my symptoms, they led me immediatly to another floor for an angiogram (angioplasty if required or directly into open heart surgery if needed).
He said of the 4 valves, one was totally blocked but it had 'repaired itself' by branching off onto other arteries and so he was not too concerned about it saying we had to get to the cause of the slow rate before he decided how he was going to go about opening this clogged valve.
So, next day he again arrives at 7 am telling me they were going to bypass the echocardiogram he had scheduled and instead sent me directly to get a pacemaker put in as my heart was not improving at all and they could not determine exactly why. Three hours later i awoke to learn they had installed a pacemaker! Sort of scary, but got to tell the truth, I feel SO SO much better even though I will be in bed for hte next two weeks. I am run down but i can breathe and I am not in total exhaustion like i was before.
I too suffer from depression, PN, Anemia and a few other maladies all of which are being treated. I have a follow up with the caridiologist next week and in the mean time I was told to see my HIV doc to see what his input was concerning my HIV meds. I changed them three months ago as my viral load skyrocketed over a month's time frame. I also take androgel testosterone therapy which was mentioned by a few of the seemingly dozens of doctors and interns i saw as a possibility for the slow heart rate.
I don't want you to get freaked out by my story but the description of what you are experiencing sounds exactly like what I was feeling. If you do not improve over the next few days, you should visit the ER and see if this might be the cause of your situation. I never thought this was causing my severe fatigue...i suffer from it already due to sideeffects of hiv meds, but it was never this bad.
Check into it...you never know!!!
"Love and Laughter and Happiness Ever After"

Offline jackfrost

  • Member
  • Posts: 93
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #12 on: October 31, 2012, 11:52:03 PM »
Thanks everyone for the support and sharing your experiences.

Yesterday I was at work and it really hurt to breath, my chest was extremely tight and I had sharp pains in my shoulders and across my chest when I would breath in. My team lead told me if I didn't go to the hospital she would send me in an ambulance lol. So off I went.

They did an ECG and that came back normal. They took a whole bunch of blood and tested for a whole bunch of things - everything came back normal. They listened to my lungs - sounded normal. Chest X-Ray came back - was normal. They have no idea what is wrong with me, but at least some things have been ruled out.

I am thinking the fatigue / memory loss issues are separate from the breathing issues. I'm thinking maybe I just got a really bad cold on top of the fatigue / memory loss, since the fatigue / memory loss started almost two months ago and the breathing issues just started in the last little bit. The stool sample and blood culture hasn't come back yet, so the hospital said they would call me if anything comes back positive.

I have my appointment with my HIV doc this Friday so I will make sure to let her know everything that's been going on. I have been trying to write everything down so I don't forget. I also have an appointment with my family doc on Monday. Thankfully I am still only working half days, I can barely manage the 4 hours a day of work feeling this exhausted.I work 4 hours and I feel like I have worked a 12 hour shift.

@buca45: yeah I've been worried it was heart / blockage problems. I do enjoy my fatty foods a bit too much. My Grandma recently had a heart attack - 2 months leading up to it, she was feeling fatigued all the time and just not feeling herself. Thankfully she's okay but had to have surgery. My Grandpa passed away from heart disease.

@tednlou2: yeah my phosphorous / liver enzymes / and electrolytes were out of whack back in September, we retested a week later and everything was back to normal. The ER doctor yesterday pulled up my latest labs (which I'm seeing my HIV doc about this Friday) and he said that everything looked good.

Offline jackfrost

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  • Posts: 93
Had my follow up appointment with my family doctor and told him that I went to the ER and told him that the Celexa has improved my mood but I am still very exausted all the time. I asked him if the issue could be sleep apnea as jg1962 mentioned. I told him I have always had issues with being congested all year round, I wake up with my mouth super dry from mouth breathing, and people always complain I snore and snort when I am sleeping. He send in a request for me to go to a sleep clinic. They called me and I have an appointment on November 21.

On a scary side note on Monday I was just sitting chatting with friends and the left side of my face felt slightly numb and my left arm went a little weak. Only lasted for a couple of minutes so didn't think to much about it. Later that night I was in bed watching t.v and the left side of my face went numb again, my left arm felt really weak and I felt really nauseated and dizzy. I felt so out of it and felt like I was going to puke so I went to bed. I woke up on Tuesday and my face was still numb and I was a little bit nauseated. I went to work and got off work at noon. I was sitting in Arby's eating lunch and all of a sudden I couldn't pick up my sandwich. My hands just wouldn't work. I was trying so hard to pick up the sandwich, I was so freaked out I had tears in my eyes. I finally picked up the sandwich and had troubles getting it in my mouth and chewing. After a few minutes it went away but I still felt out of it. Because I was out of it, I drove home - not so smart. Got home safely and walked in the door and my roommate looked at me and said "what's wrong". I was trying to tell her what happened and all I could get out is "my brain isn't working." I tried to explain to her what happened, my speech was really slow and halted, slurred some words. She said "I think you are having a stroke, I'm taking you to the hospital". To the hospital we went. They did a whole bunch of neurological tests, my left arm and left leg were considerably weaker than my right side. They sent me for a CT scan - that came back normal. They said a stroke won't always necessarily show up in a CT scan so they admitted me for observation overnight and the next morning they sent me for an MRI. MRI thankfully came back normal - didn't have a stroke - yay me! Senior neurologist said she believed I had a rare type of migraine - a hemiplegic headache with aura symptoms.

Offline mikeyb39

  • Member
  • Posts: 921
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #14 on: November 09, 2012, 01:17:28 AM »
hi Jack,
this has been happening to me as well with the facial and arm numbness.  i too had CT and MRI to rule out a stroke and also an EEG.  I do have migraines which have gotten worse over the past 6 months or so.  My Neurologist says my facial numbness and such is due to my migraines and my anxiety makes  it worse when it happens.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline Bunny

  • Member
  • Posts: 61
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #15 on: November 09, 2012, 05:42:52 AM »
Hi Mickey....

The same problems I have experienced since last year when I start Stavudine therapy. The same amount of neuropathy (tinglings, numbness,pain) problems currently I have,  when I get these last year. On my forehead and scalp I have felling like some thing moving around.  I have two MRI ( Brain + Spine ) done  all are normal.

After changing d4t+nvp+3tc to azt+nvp+3tc but no luck. Recently my combo has been changed to 3tc+EFV+TDF after I got PCP recently. I am waiting this new combo, how effect on me.

You guys are very lucky having insurance plans in your country.  We need pay every penny from our packets. No any insurance company covered HIV people in INDIA. All our blood works and ART we need to pay.


Good luck to you mikey.
« Last Edit: November 09, 2012, 05:48:44 AM by Bunny »
August 2010, CD4 320
December 2010, CD4 250
June 2011 CD4 ?,(started lamivudine, nevirapine, stavudine )
September 2011, CD4 488
January 2012, Switched drugs due to severe Peripheral neuropathy (Started lamivudine, nevirapine, Zidovudine)
February 2012, CD4 485
August 2012,CD4 472
October 2012, Switched drugs to Lamivudine, Tenofavir, Effavirenz
Jan 2012, CD4 600
Sept 2013, CD4 555
Mar 2014, CD4 612

Offline mikeyb39

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  • Posts: 921
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #16 on: November 09, 2012, 10:43:35 AM »
Hi Bunny
i sure hate to hear that about the insurance issue, it just doesnt seem fair.  I know you been having quite bit of issues similar to mine.  I hope that soon things will start to get back to some normalcy for you.  Some folks dont unferstand how life altering these neuropathy issues are unless one is dealing with it
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline jackfrost

  • Member
  • Posts: 93
Re: I'm tired of being tired, oh so tired ugh :-(
« Reply #17 on: November 10, 2012, 02:10:28 AM »
Thanks for sharing Mikey I appreciate it. The numbness started getting worse for me, it went from the left side of my face around my temple and cheek, into my neck and ears. Arm and hand started feeling weak again. Neurologist told me if it got worse to go back to emerge to get IV meds. Went back to emerg and they gave me migraine meds and anti-nausea meds, after 15 minutes the doctor came back and asked if they were working, they were I said the numbness was almost gone. He let me go and sent me off with a prescription. I was half way driving home and the numbness came back with a vengeance, worse than when I got to the hospital, it was like the meds made it worse. Now I'm afraid to fill the prescription in case it happens again


 


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