What Do I Do Now?

[Jacquie802]

Hi,

So, I had to discontinue the Florinef due to headaches I got 3 months into taking it. I was not on any meds for a while and felt alot worse. Now I am on Midodrine and I have the headaches once again, but it feels like pressure at times too. I can't figure out whether it's due to the meds, allergies, migraines....Otherwise I feel good, because I can actually function.

So, what should be my next step besides talking to my doctor. Is there any test to see what's causing my headaches? I have had a brain MRI already which came back normal. I just don't know what I should do at this point.

I hate thinking about not being on any meds for my bp because the summer is coming and the warm weather is already bothering me.

Please feel free to add your 2 cents!

Jacquie

[luckygoat3]

What i take to help prevent headaches daily is corgard, it's a BP med but used for headaches. Works pretty well, but right now i am in a tissy with headaches mostly due to the weather...just wish it would decide no rain. My MRI's, CT scans, EEG's, and every other test comes back clean, so i have no clue why my head is always hurting.

1-5 it's usually a 3, never been a 1. 5 is totally bed bound whcih i have had twice this week.

susie

[Poohbear]

Are you on a bb? I ask because they use bb in some people to prevent migraine so if you haven't discussed that with your Dr that may be an option.

Some people do best with a combo of meds so maybe you need midodrine with a bb

[MightyMouse]

Pooh, Jacquie lists toprol xl as one of her meds--I believe that is a beta-blocker.

[Guest Mary from OH]

Jacquie,

The drugs you list are common to having problems with side effects of headaches. Have you ever been diagnosed with migraines? You don't list it as any of your dx, but I seem to remember your talking frequently about your "headaches".

If that is the case, you may have migraines. This is a common comorbid condition with POTS. There are literally 100's of meds they can use to prevent and treat migraines. It's good that your MRI was clear, that means you have no "permament damage" from your headaches or no structural cause for them. Personally, I would seek out a headache specialist in your area (and also avoid meds that tend to list headaches as the #1 side effect since you're prone to them anyway). Two great sources to find a headache specialist are:

www.achenet.org

http://headaches.about.com/od/recommendedspecialists/

This is a list of common preventative meds for migraines:

http://headaches.about.com/od/medsarticlesandinfo/a/preventive_meds.htm

I hope this info is helpful. Please let me know if I can give you any more specific info. Take care. I live with migraine every day of my life as I have intractable migraines. You are not alone.

[Jacquie802]

Hi guys,

I am still on Toprol, but I am only taking half a tablet...I may go up to a whole one though. I talked to my neuro and cardio today....The neuro told me to discontinue the Midodrine until I see him Tuesday, which is the day of the study and we could talk and figure something out. In the meantime he told me to take some Ibuprofen. My cardio told me to not stop taking the Midodrine (only to stop when I am supposed to for the study) and to take some Ibuprofen as well.

We (my neuro, cardio, and I) don't think the Florinef or Midodrine is causing my headaches. My cardio would like me to see a neuro at his hospital. I honestly don't know what to do at this point. The Ibuprofen helps out somewhat but doesn't quite do the trick. I need something to raise my bp, esp. because of the hot weather.

A few months back, I think even before I was on the Florinef I went to my PCP office because I kept getting headaches (of couse I just remembered this now, not when I was talking to my doctors) and the doctor I saw (not my primary care doctor that day, but one of the doctors in his office) said that they thought I was getting cluster or tension headaches or something like that....The thing is that I may not have a headache when I first get up in the morning or it could be a mild headache, but once I took the Florinef it got worse and now once I take the Midodrine it gets worse, BUT I still have the headache even after 4 hours of taking the Midodrine...

Anyhow, thanks for listening to me vent, I just don't know quite what to do right now. I like the neuro I see right now and I really don't want to switch, but these headaches are kicking my butt!

Jacquie

[MightyMouse]

One thing to consider is that midodrine is intended to be taken every 4 hours, with the last one at least 4 hours before bed, not necissarily 3 x a day as you list in your signature. Another issue could be your midodrine dose. You can start as low as 2.5 mg per dose, and the typical max is about 12.5 (although that's not a absolute rule), so 10 mg might be too much for your system.

When I was on midodrine, I ranged usually between 2.5 and 7.5 per dose, and needed about 10 during and just before my period. Perhaps adjusting your dose to a lower one might relieve the pressure/headache--certainly all of these are some things you could ask your doctor (cardio) about.

Also, if you stop taking midodrine the night before your neuro study, it will be completely out of your system by the time you have the test so long as you've got normal kidney and liver functions to clear that kind of stuff (Im assuming you do b/c you didn't mention any major blood test abnormalities).

Nina

[Jacquie802]

Hi Nina,

I have to update my info. I am only taking 2.5mg of Midodrine which is supposed to be every 4 hours but I've only been managing to take it once a day. My cardio would like me to take the 10mg though, esp. after me almost passing out the other day...No clue what I am going to do!

[MightyMouse]

Gotcha! Well then, 2.5 only once a day is pretty low, indeed! Not sure what to suggest for you other than to continue to work with your doctors to find something that works for you, even if that's not what you're on now.

Nina