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Seeking for a patient with similar symptoms to mine


Ebrahimi

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I have experienced dysautonomia like symptoms since 2013. For the first two years, i did many tests (several blood tests, several 24 h urinary tests, brain and adrenal glands MRI, endoscopy, sonography, ecocardiography, etc.) but the illness was not diagnosed and different doctors said different things.

In the last months i have been diagnosed with Pure autonomic failure, but some of my symptoms are non-specific. i want to know is there anybody with symptoms similar to mine? my symptoms are:

- Postural hypo-tension. ( I do not experience postural hypotension constantly, somedays my postural hypo-tension is severe and i experience severe dizziness, heart palpitation (hard heart beat) and severe breathless when changing position or after eating, but somedays i am good and the postural hypo-tension becomes mild.)

- hypohidrosis ( I am experiencing severe hypohidrosis and severe heat intolerance)

-I do not have supine hypertension (which is common in PAF)

-i do not feel better with salt and sometimes it causes dizziness.

Is anyone with the same symptoms? specially irregular postural hypo-tension.

Tank you

 

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Hi Ebrahimi, I also have been diagnosed with PAF. My understanding is, also, that the symptoms can be very different with individuals. I do have irregular postural hypo-tension. However, mine is often accompanied by supine hypertension. I can go months of even years with stable blood pressure ---110-120 when standing and supine. Then, like now, I will develop OH and just be flattened by it. I have not been able to identify triggers. My neurologist advises me to stop looking for triggers as you can always find something and that may not necessarily be it. Of course, I do everything I can to avoid triggers. I do have heat intolerance and hypohidrosis as well but that also comes and goes. I tend to feel better with salt. I do notice that I feel much better when drink a lot of electrolytes along with my salt. I do not have heart palpitations but did suffer from severe bradycardia and they implanted a pacemaker when I was quite young. I don't tend to have much breathlessness. When it happens, I am generally doing something physically taxing. I only have mild or moderate exercise intolerance, so I do find that my symptoms are better with a regular exercise plan. At the very least, I walk my dog once a day. I may feel dizzy, but I drink a lot before and after and that seems to help. Are you able to exercise? PAF is not as common as POTS. I don't know enough about it to explain why we don't have tachycardia. Nice to meet someone who also has PAF. I have found that I have periods when I do pretty well and then, I will have a big or small relapse. I have to remind myself to wait it out and I will stabilize. It never seems to happen soon enough! Florenif might be helpful for you, especially since you don't have hypertension. I take Florenif but it means that I am hypertensive all night when I am lying down which is not a good thing. I hope you find some answers.

 

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6 hours ago, Ebrahimi said:

I have experienced dysautonomia like symptoms since 2013. For the first two years, i did many tests (several blood tests, several 24 h urinary tests, brain and adrenal glands MRI, endoscopy, sonography, ecocardiography, etc.) but the illness was not diagnosed and different doctors said different things.

In the last months i have been diagnosed with Pure autonomic failure, but some of my symptoms are non-specific. i want to know is there anybody with symptoms similar to mine? my symptoms are:

- Postural hypo-tension. ( I do not experience postural hypotension constantly, somedays my postural hypo-tension is severe and i experience severe dizziness, heart palpitation (hard heart beat) and severe breathless when changing position or after eating, but somedays i am good and the postural hypo-tension becomes mild.)

- hypohidrosis ( I am experiencing severe hypohidrosis and severe heat intolerance)

-I do not have supine hypertension (which is common in PAF)

-i do not feel better with salt and sometimes it causes dizziness.

Is anyone with the same symptoms? specially irregular postural hypo-tension.

Tank you

 

Look into MCAS. When I started treating that alot of my symptoms, similar to yours, got much better. 

 

Issie

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Thk u for ur responses.

Reading the forum and the network was helpful for me. meanwhile i am somehow confused, my suspected diagnosis is PAF but it is not certain.

i have another symptom that, as i read the site thoroughly, i guess is not common. when i change my position, my BP falls but it recovers after seconds and i can stand for a long time. i think maybe its the onset and it will develop and in the near future i can not stand.

 

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On ۱۳۹۵/۱/۱۱ ه‍.ش. at 8:47 PM, issie said:

Look into MCAS. When I started treating that alot of my symptoms, similar to yours, got much better. 

 

Issie

I will talk about it with my neurologist, but as i searched the main symptoms are  1-gastrointestinal, 2-skin and 3-O.H.  and i dont have any nausea, vomiting, diarrhea, abdominal cramping or skin condition. Did u have these symptoms?

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Guest KiminOrlando

Pure Autonomic Failure here. Heat intolerance. No supine hypertension. No response to Midodrine.

I just started on Droxydopa. So far, nothing else has worked, but only a couple of weeks with the Droxy. I am being managed by a fabulous cardiologist out of the Medical University of South Carolina. I got no help until I went to Charleston. Unfortunately the Mayo Clinic couldn't do anything for me

You said hypohidrosis. Did you mean hyperhidrosis where you are constantly sweating when you stand up?

Yes, mine got progressively worse, so that may be happening, or there are different kinds of PAF, is my understanding. My cardiologist only treats cardiac issues with autonomic involvement, so you need to find someone like that. They are very difficult to find, unlikely to be in your town. Most of them are at University hospitals because they are typically involved in research. You may have to search PUBMED (BING search PUBMED home, then when it brings up the page, put pure autonomic failure in the search box). Start reading the physician published articles. It is technical and I don't understand a lot of it, but the more you read, the more you start to understand. My docs contacted a specific doctor who is published on PUBMED and asked him to review my case, he agreed, and then agreed to see me for a consult. I was lucky enough to be seen for a real second opinion at Vanderbuilt. They ran tests and communicated back with my doctor in Charleston. If you can afford it, I HIGHLY recommend Vandy. I don't know if you can call Vandy and get in without being accepted. I hope you can.

You aren't alone, it just feels like it.

 

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On 4/8/2016 at 7:09 AM, KiminOrlando said:

Pure Autonomic Failure here. Heat intolerance. No supine hypertension. No response to Midodrine.

I just started on Droxydopa. So far, nothing else has worked, but only a couple of weeks with the Droxy. I am being managed by a fabulous cardiologist out of the Medical University of South Carolina. I got no help until I went to Charleston. Unfortunately the Mayo Clinic couldn't do anything for me

You said hypohidrosis. Did you mean hyperhidrosis where you are constantly sweating when you stand up?

Yes, mine got progressively worse, so that may be happening, or there are different kinds of PAF, is my understanding. My cardiologist only treats cardiac issues with autonomic involvement, so you need to find someone like that. They are very difficult to find, unlikely to be in your town. Most of them are at University hospitals because they are typically involved in research. You may have to search PUBMED (BING search PUBMED home, then when it brings up the page, put pure autonomic failure in the search box). Start reading the physician published articles. It is technical and I don't understand a lot of it, but the more you read, the more you start to understand. My docs contacted a specific doctor who is published on PUBMED and asked him to review my case, he agreed, and then agreed to see me for a consult. I was lucky enough to be seen for a real second opinion at Vanderbuilt. They ran tests and communicated back with my doctor in Charleston. If you can afford it, I HIGHLY recommend Vandy. I don't know if you can call Vandy and get in without being accepted. I hope you can.

You aren't alone, it just feels like it.

 

Right. There are different kinds of PAF and symptoms vary from one to one. 

I have started to read published articles and books and i have not much difficulty to understand, since i am somehow a nanobiologist, but the more the paper i read the more i get confused! because there are contradictions in the results of researches about dysautonomia and many aspects of it are unknown.

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Hi, Ebrahimi, (and all)

Welcome to the forums! Amongst a community of almost 5,000 members, and just in your topic alone you've already seemed  to identify with a few who know what you're going through, I'm sure there will be others, so hang tight.  I just wanted to say hi and offer some resources that you or the other members may not have seen yet.

Also, on DINETs main page, we have a section for PAF links

kim mentioned she had started Droxidopa recently (Kim I'm hoping your noticing improvements!),  I've heard is supposed to incredibly promising. I was wondering If you had tried that as of yet,  I know another option is Midodrine and also Octreotide. I'll include some info and studies at the end. Best of luck to you also, kpflma, on your exercise regimen. Taking your dog for walks must be therapeutic in a sense for you both. I'm lucky if I can make it to the mail box some days! I like walks, and I bring my  great dane,... but like I try to remind myself, tomorrow is another day, and maybe then I'll bring my yorkie, too! :)  - All my best to you all, Sarah

a drug treatment of orthostatic hypotension because of autonomic failure or neurocardiogenic syncope"  Lamarre-Cliche M1.   http://www.ncbi.nlm.nih.gov/pubmed/114727996

"Idiopathic Orthostatic Hypotension and other Autonomic Failure Syndromes" Author: Mohini Gurme, MD, Chief Editor: Selim R Benbadis, MD (This is quite lengthy but covers various chapters in great detail)  http://misc.medscape.com/pi/android/medscapeapp/html/A1154266-business.html 

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On 4/10/2016 at 10:41 PM, SarahA33 said:

Hi, Ebrahimi, (and all)

Welcome to the forums! Amongst a community of almost 5,000 members, and just in your topic alone you've already seemed  to identify with a few who know what you're going through, I'm sure there will be others, so hang tight.  I just wanted to say hi and offer some resources that you or the other members may not have seen yet.

Also, on DINETs main page, we have a section for PAF links

kim mentioned she had started Droxidopa recently (Kim I'm hoping your noticing improvements!),  I've heard is supposed to incredibly promising. I was wondering If you had tried that as of yet, Ebrahimi? I know another option is Midodrine and also Octreotide. I'll include some info and studies at the end. Best of luck to you also, kpflma, on your exercise regimen. Taking your dog for walks must be therapeutic in a sense for you both. I'm lucky if I can make it to the mail box someday's, and of course  I bring my  great dane,... but like I try to remind myself, tomorrow is another day, and maybe then I'll bring my yorkie! :)  - All my best to you all, Sarah

a drug treatment of orthostatic hypotension because of autonomic failure or neurocardiogenic syncope"  Lamarre-Cliche M1.   http://www.ncbi.nlm.nih.gov/pubmed/114727996

"Idiopathic Orthostatic Hypotension and other Autonomic Failure Syndromes" Author: Mohini Gurme, MD, Chief Editor: Selim R Benbadis, MD (This is quite lengthy but covers various chapters in great detail)  http://misc.medscape.com/pi/android/medscapeapp/html/A1154266-business.html 

Hi Sarah

Thank you so much! 

At the moment i am on antibiotics because they think my dysautonomia is kinda autoimmune. By antibiotics i am noticeably better, even i can run slowly.  After antibiotics maybe i try Droxidopa or midodrine. 

I found many helpful info in the forum. This is a great community with great members. 

Take care.

 

 

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