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Author Topic: Constant headache...?  (Read 1793 times)

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Offline lost_boy

  • Member
  • Posts: 105
Constant headache...?
« on: August 02, 2013, 01:04:48 PM »
Hey all,

Just wondering, how common is it to be on medication and have something of a persistent, low-level headache? It's not stopping me going about my life but it's very distracting and a little worrying.

I am currently on kivexa+sustiva combo, have been for about a year. No real side effects other than a bit of dizziness half an hour after taking them (if I don't go immediately to bed), but that quickly subsides.

Could the headaches just be something that have built up over time, or symptomatic of something else? I'm not unduly stressed or anything like that. Interested to know other people's thoughts/experiences.


Offline mitch777

  • Member
  • Posts: 4,087
Re: Constant headache...?
« Reply #1 on: August 03, 2013, 10:01:51 AM »
Hi Lost,

While I don't really have an answer for you, I can tell you my experience.
I've had daily chronic headaches for 2 1/2 years. They generally start in the late afternoon or early evening, last until I fall asleep and many of them are debilitating.
Nothing I've tried has been very helpful. Meds, Botox, Chiropractic, acupuncture, physical therapy, etc.

Changed my HIV meds (not for the headaches) from Atripla to Truvada and Isentress. Stopped taking Hydrochlorothiazide temporarily. No change. Almost every drug on the market lists headaches as a possibly side effect.
My neurologist believes mine stem from 2 bulging disks in my neck.
I have Googled headaches so many times that I am beginning to think Google is to blame.  :P

It seems that headaches can be one of the most difficult things to pinpoint a cause and cure.
I took a break from trying another med for headaches because of other med changes and new meds (non-headache related) so I could know of any side effects, one drug at a time. In about 3 months I will try again. Starting a new antidepressant med in 3 weeks and need to learn what side effects THAT one has in store for me before going forward with another headache med. Ugh.

Now that I've cheered you up  ::), I wish you the best in finding out a solution. Many people do find relief.
How long have you had these headaches?
They might be caused by stress and go away soon on their own. :-\
Good luck! :)

PS- I take ONE Excedrin Migraine every once in awhile when I can tell a bad headache is looming. It knocks the pain level down a notch or two but taking these too often can cause what they call rebound headaches. Also not good for your gut on a regular basis.
Sorry for the long reply of not so helpful info.
33 years hiv+ with a curtsy.

Offline mecch

  • Member
  • Posts: 13,406
  • red pill? or blue pill?
Re: Constant headache...?
« Reply #2 on: August 03, 2013, 10:53:18 AM »
Aren't you the one who has the unusual case of low and declining CD4s even though you are undetectable?  Where does that stand a year later? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline klassykitty

  • Member
  • Posts: 381
Re: Constant headache...?
« Reply #3 on: August 03, 2013, 04:06:28 PM »
Hi lost,

I get headaches most of the time too.  Unlike Mitch's mine aren't to bad, except for those once a month ones that make me stop doing everything :(

I have noticed that if I don't drink much soda, ice tea (especially the store kind), or eat a lot of chocolate I don't have them as much.  What I don't understand is my friend who gets horrendous migraines drinks a coke and her migraines subside.

About 6 months after my dx I started to take most of my pills around bedtime because then it didn't matter about them since they very seldom keep my from sleeping.

Good luck :)

Michelle 8)

How to handle stress like a dog:
If you can't eat it or play with it.....
then pee on it and walk away

Diagnosed 01-20-2011
01-23  CD4 32    VL 125,400
02-18        76     VL 189
03-14  no cd4 test done   VL-52
04-14   69  VL-UNDECTABLE  YEA!!
05-26   50  whoopsy  
06-27   71        %-7
08-15   64 WTF %-9 
10-16  80         %7  
2012  CD4  %Thing   VL-UD
01-18  87    7
04-18  93    8  
07-16  151  8         
10-18  83    9    VL-70
2013   CD4   %thing       VL-UD
01-28  121     9
04-24  148    11   
07-25  157    11   
10-22  185    13
2014   CD-4  %thing   VL-UD
02-07 201 YEA!!!!!!  12
06-03  205      12

Offline eric48

  • Standard
  • Member
  • Posts: 1,361
Re: Constant headache...?
« Reply #4 on: August 06, 2013, 06:36:34 PM »

I do not have that dizziness you describe after taking the meds. I take them first thing in the morning. If I take them at night I am getting so much anxiety that I can't sleep

Headaches are a recurrent problem for me. I use an aspirin that has an enteric coating. It acts like a slow release. Seems to have improve the situation

So it is in my pill box and thus every morning I gob 300 mg of slow release aspirin. The cardiologist insisted I take less , but this seems to be the dosage I need.

I take Viramune and Kivexa. This is a combo with a high brain penetration factor.
The problem with high brain penetrating drugs is that they are really getting into your brains.

The is not a day where I do not worry about this, because there will always be something to remind me my brains are 'medicated' (anxiety crisis, loss of attention, etc)

Recently my immunologic data seem to have improved. I suspect I still had an inflammated state in the brains, so may be this has cooled off.

Chocolate is a good anxiolitic and I would eat tons of it if it where not for the calories.

Brains is the fastest sugar burning organ. This will create an urge for more sugar in blood, making your blood sugar level go up! lots of of water drinking may help.

I have always been suspicious about Kivexa. I do not have a real smoking gun proof, but, for my first 6 months, I was on Viramune twice daily, until I moved to off label once a day 2 pills together, now, Viramune has extended release so It is once a day. Well... When I was taking Viramune  twice a day 200mg and since Kivaxa is once daily, I could experiment a bit about taking Kivaxa in the morning or at night. That would not change the Viramune intake, since one was in the morning, the other at night anyway.

First 2 months I took Kivexa at nights.

Due to anxiety, could not sleep, so doc suggest I take it in the morning. I think I could not stand it more than one week. So back to Kivexa at night, and sleep problems.

So, at few months later, I tried again to move Kivexa in the morning. After a bit of adjustment, it worked for me.

Recently I added some other medication (Crestor, LDL lowering statin) that I should take at night (cardiologist said pompously), so, in order to have only one dosing a day, I tried to move kivexa in the evening. I could endure it no more than 2 days! that was horrendous

So I am back to morning dosing (including the Crestor, not telling my cardiologist , who nonetheless praised me for my good 'nightly' adherence and low LDL levels, LOL)

Some meds (whatever) will 'slow' you down. Obviously all those in the psychiatry dept, where there is a warning that you should not drive while n medication.

I suspect Kivexa is doing the opposite.

Kivexa contains abacavir. Recently I read a study about HAND (neurocognitive impairment). In this statistical long terms follow up they did not find any corelates betwen the type of drug and neurocognitive impairment, expect for a statistically pertinent negative correlation for ABC: In other words Abacavir user where performing better than others

Abacavir users will love the irony of this finding in here:
Cardiovascular risk factors and carotid intima-media thickness are associated with lower cognitive performance in HIV-infected patients:
... abacavir use was independently associated with a better cognitive performance  ... (no kidding)

Hope this helps

NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly


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