Neurogenic Orthostatic Hypotension

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Does anyone in this group have experience with this diagnosis? Waiting to see if it is PAF (pure autonomic failure) or MSA (multiple system atrophy).

Have been dealing with this for years and now symptoms are escalating.

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  • Posted

    Hi

    I haven't had a proper full diagnosis in nearly 3 years. I have a lot of symptoms

    and in the middle of consultants with different opinions.

    I have Autonomic Neuropathy, Atypical Parkinsonism , MSA has been

    questioned. Can I ask you what are all your symptoms?

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    • Posted

      Low BP, and I mean low, low body temp and trouble regulating body temp, heat and cold neuropathy, dry mouth and eyes, photosensitivity that is extreme, GI problems, low oxygen levels without obstructive sleep apnea, peripheral neuropathy and brain fog with fatigue.My doctor placed me in the MSA category this week. Still digesting. I think the exact diagnosis was multiple autonomic sytem failure. I'll get back to you on that. I don't have Parkinson symptoms at this time.

      How does your autonomic neuropathy show or what are your symptoms I should say?

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  • Posted

    Hey cowgirl,

    Theres a long way between hypotension and MSA.

    I have PAF apparantly. It took 4 years of finger in the air diagnosis.Sometimes i feel like a fraud and its all hypercondria. Somedays i feel like I have a death sentence. Point is, its all a bit of a mystery to you,me and the proffessionals. Steer clear of alchohol, stress and heat and do everything in moderation. Be nice to yourself and keep an eye on anxiety.

    Equillydire.

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    • Posted

      Thanks so much for ther kind words. I agree. Even when I see things on paper I tend to think the docs must be over reacting. My Sister was 54 and died unexpectedly this week with autonomic dysregulation. Hit her heart. I am so sad. She was only diagnosed this year (10 mos) and I have been dealing with it for 25 years. Crazy. But I know I don't feel or look anything like she did. So I will remain optimistic about myself, take my medicine and grieve for her.

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    • Posted

      May I ask what your symptoms were/are and how you were diagnosed? I am at a major university medical center. I keep slowing down. Have been on oxygen for 7 years also when I rest. My body forgets to breathe unless I am moving.
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    • Posted

      Hi cowgirl,

      Sorry about your sister. Must make it doubly hard for you. And yes iis hard not to think the worst.

      My symptoms are pretty typical...periodic feinting Bradycardia, hr 38, low bp etc.Now its bowel problems with incontience. But for me It is the dizzynnes and fatigue. Anxiety/depression are the hardest things to cope with as it is so hard to share without sounding like a complete neurotic.

      Route to diagnosis was unsympathetic GP, several arrogant cardiologists and finally a sypathetic neurologist. Recently refferred to unit in London.

      Equillydire.

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    • Posted

      Your symptoms sound very much like mine. The recent addition of bowel problems has been quite demoralizing redface. The Florinef has really been a lifesaver in terms of stabilizing my bp but now the fatigue is out of control. I had several difficult physicians as well.Some were very sarcastic. Nearly fainting is a very common occurence for me but I have learned the warning signs and can usually sit down or get to a place to rest. I have a rolling walker for long hikes that has a seat and space for my Gatorade and Vitamin water.

      May I ask what types of treatment you have tried?

      Take Care

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    • Posted

      I guess im still relatively active most of the time. I just have to be careful not to overdo it (dizzy spells and visual problems) Treatment options thus far have been, mind over matter, drinking more water, sleeping more and...oh yes...I tried midodrine for a while but found it a bit phycho. I was offered compression stockings too but then they couldnt get ankle brachial readings to suit the compression grades so gave up. Like i said, i havnt met anyone yet who seems to know what there dealing with.

      Sorry to be negative. Best treatment for me has been to not think about it.

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    • Posted

      Hey there. Just checking on you to see how you are doing. I am at home undergoing a 24 hour cardiac monitoring (Holter Test). I've had 3 or 4 of these in years past. The test is no big deal but it is an inconvenience and I am really tired of tests. Wondering if you have tried Hymalayan Sea Salt? A tsp in warm water each morning boosts your energy and bp if you have low bp. My doc has me do that. Understand why you have negative feelings. I am in that place this week. Take Care

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