Update- migraines and fainting

Hi All,

I just wanted to post a quick update. I have been away for a few weeks- staying with a friend while my Mom had back surgery. She is home now and recovering and I am trying to help as much as possible.

The headache is pretty bad right now. I feel I may need an Iv of Depakan soon, but am trying to avoid it for as long as possible due to the fact that Dad and I are both trying to help Mom through this recovery and I don't want to do it unless I have to. The fainting is still bad as well. Still fainting anywhere between 1-8 times a day. I have no clue what to do about either problem, except to keep going. T3, Klonopin, and benedryl are helping the headache. exvcercise and Cpap are helping the fainting a bit.

Anyway, just wanted to let you know that I am still here- struggling, but still here.

Pain free days,
sailingm

Hi muffin

So sorry to hear you're struggling ((hugs)) I can understand you want to avoid the IV as long as possible...but it's horrible to have to be in pain.

How's your mum going? Is she in a lot of pain? Is she in bed for recovery or able to move around?

Is your condition related to some kind of dysautonomia? I think you've said what you have before but I forget the name of it. A friend of mine has Postural Orthostatic Tachycardia Syndrome - basically she can't stand up without passing out and has a constant horrific head and light intolerance because she can't regulate her autonomic functions including blood pressure. Is that related in some way to your condition?

Wishing you pain free days

Hi,

Thanks for the reply.

Mom had five levels of her back fused about 3 weeks ago. She is still having a really hard time. She also had a fall last week, which really set her back- nothing was damagecd, just badly bruised. She is in bed and walking around the house some each day.

I did call my neuro about the IV yesterday and we will schedule it next week when my nurse gets back in town. THe headache is really pretty bad.

Yes, the fainting condition is dysautonomia. I have been several different diagnoses- POTS/ Neurocardiogenic Syncope/ dysautonomia. They all mean the same thing- basically that my bp drops, heart rate increases and I fall. Still looking for answers on this one. I know I will eventually find them.

Pain free days,
sailingm

Hi again,

I really feel for you (and for your mum!). It sounds like your whole family is going through a very challenging time health wise. I'm sorry to hear your head is still so bad. It is probably a good idea to get you some relief, even in the short term, through the IV Depakan. Is that the only thing that works for you? Shame you have to wait more days for it though

This business with dysautonomia must be one of the least understood conditions around. I have seen some excellent videos on it put out by the dysautonomia foundation or whatever they're called. One of the doctors actually had a form of the condition himself. I know several people who suffer from various forms of it and it seems to be so hard to even get a diagnosis in the first instance which isn't 'anxiety'.

My little friend is only 16 and she spent 2 months in a geriatric rehabilitation unit where they variously tried to convince her she is anorexic (when in fact her digestive system has simply shut down), anxious (when she's tachycardic), hysterical etc etc etc. She couldn't even read because her pupils wouldn't focus. And her head - well they ignore that because the standing up/fainting issue was more obvious.

I'm guessing you've tried a lot of the drugs out there which she has tried to try and manage the blood pressure and tachycardia - and she has to eat a LOT of salt. Are you on the same kind of regime? If you want information on the drugs that she's on (which to be honest, are still not actually letting her stand up yet) I can find out for you. They are a mix of the standard POTs ones. Trial and error - mostly error at this stage.

Hoping you get some pain free days very soon ,
Living