No idea where to go from here

[tonimackerz]

I am 21 and was diagnosed with having Dysautonomia last year after suffering with symptoms for 6/7 years without any help. I have tried Amitriptyline, as suggested by the doctor, but it doesn't seem to have done much to help me. They cannot give me a more specialised diagnosis of the Dysautonomias, just that I have one. My symptoms include: insomnia, gastric issues (nausea, bloating, reflux), breathlessness on exercise, headaches. It's affecting my everyday life and am finding it very difficult to cope with this.

I am really at a loss of what to do, nobody seems to be able to help. Has anyone else been struggling with treatment/proper diagnosis or have any recommendations/ideas of what I can do to help get this under control?

[RecipeForDisaster]

I am in a similar boat and I know there are many others. I don't even have a solid dysautonomia diagnosis yet but am, finally, starting to be treated for it. That is, midodrine and metoprolol in addition to all of the salt, stockings, etc. All I get is "it does sound like a dysautonomia".

Since I have not been easy to diagnose, it seems that all of my specialists and primaries are fine with not knowing what is wrong with me. The only reason I am still getting tested is that I am seeking it. I often feel like it is not real (because of not having a label for it) and I just need to fake my way through life as if I feel okay. I do have more autonomic studies coming up in December.

[yogini]

Have you seen a doctor listed on the DINET page?   The treatment is really individual, based on your symptoms and test results and someone who has lots of experience in treating dysautonomia can best help guide you.  And yes, Recpie is right, a lot of the burden is unfortunately on the patient.  My treatment moved forward because my family and I researched a lot, tried different doctors, insisted on trying different medications, etc.

[BuffRockChick]

What can you do?  Track your symptoms diligently and use google.  google scholar is great!

I had orthostatic vitals checked once a few years ago and it was missed!  I discovered POTS while reading only about every possible reason for fatigue (hint: hundreds of them).  I stood up, checked my pulse, and the rest is history!  i had to advocate strongly for myself because I'd been misdiagnosed so many times with psychiatric conditions.  it was worth the hassle.

[vepa]

Psychologically, I find the label very helpful, but in terms of treatment, I feel like the doctors never seem to care that much. Dysautonomia treatment is essentially boiled down to treating the symptoms, so to them it doesn't matter what they call it, they're just focusing on addressing each individual issue. My first two doctors didn't even run tests or give me an official diagnosis, they just said to drink a lot of water, eat a lot of salt, and wear compression socks. So they knew the gist of the diagnosis and treatment, but didn't think the labels mattered at all. I find that if I want something specific like a true diagnosis or a specific treatment I have to be the one subtly pushing it without coming off as the patient who googled something and decided that made her more knowledgeable than the doctor, because I find that makes them even more dismissive. So instead I say things like "I heard something about X. Do you think that's what I have? Is there a test for that?" Or "do you think Y drug would be useful for someone like me?" Suddenly they feel like I'm asking for their medical advice and are much more open to it. It's frustrating, because it feels like you're doing the doctor's job and giving them the credit, but to me it's worth it for getting the care I need.

 

[yogini]

There are some meds which help multiple symptoms.  For example when I was on Paxil all my symptoms improved.  I suggested things to my doctor the way vepa did and found multiple doctors who were receptive to that approach.

[DizzyGirls]

I have a 21-year-old and a 19-year-old and I've always had to advocate for them.  There is not a doctor out there that took them seriously until we finally got to Stanford's Autonomic Clinic. But, before that, we had a neurologist and he finally exclaimed one visit "YOU FRUSTRATE ME!!"  I could have strangled him.  I frustrated him???!!!  How does he think WE felt?  You have to keep pursuing on.  I've been advocating for my daughters for the past 21 years.  Yes, it gets old, but, as the old saying goes, "if you want something done right, do it yourself."  So, I diagnose them myself and then find a doctor that specializes in treating whatever the problem is at the time.  It stinks that's the way it has to be, but, you'll be better and smarter for it.  Hang in there.  Life is tough, but we can't give up.  It's not an option.  Some of the best places to find out good information are the forums.  People tell it like it is, not like a textbook.  But, you have to keep on reading the medical journal articles, too.  You'll pick up on the "medicalese" the more you read.

[girl]

Toni, I also didn't benefit from amitriptyline. Has your doctor tried you on Mestinon? I finally got in to see a neurologist who specializes in dysautonomia, and she had me try Mestinon for breathlessness, fatigue, and lightheadedness. (It would probably NOT help with the gastric issues, unless by throwing a wrench into things!) If it doesn't work at all, that might be interesting as well; I knew within an hour of taking it that it was helping. My PCP was hesitant to prescribe Mestinon because she wasn't familiar with it, but I'm kicking myself for not persuading her to let me try it when I asked about it years ago.

[MonkeyBug]

Look into Anthony William the medical Medium. He has a radio show on dysautonomia. 

[firewatcher]

Sorry you have this, but I am glad you are here. I've had my diagnosis (hyperadrenergic POTS) for over 10 years and honestly, I'm still trying to get a handle on symptoms and successfully deal with every day. I heartily second Yogini's suggestion of going to an Autonomic Specialist (Vanderbilt, Mayo, Cleveland Clinic, etc.) Most doctors will not know what they are looking at, they just don't see enough of us. Even with really common disorders, like migraine, there are few real specialists that understand the disorder (maybe 2 per state unless you are in a MAJOR city.) Take a deep breath, and get started educating yourself: what helps and what makes it all worse for starters. Keep a symptom log and get every one of your labs and medical records you can get your hands on and organize them for yourself. Talk to the doc that dx-ed you with dysautonomia and see who they suggest you see, why did he dx you with it? 

Lifestyle and diet changes can be good, but many are highly personal (what is good for one, may not be good for you.) You will likely know what your bad habits are already. I recently kept a food diary to see if anything I was eating/craving were migraine triggers, surprisingly there were several (ketchup, eggplant, cooked tomatoes...) I don't eat them anymore and I am doing better. My neurologist and nephrologist agreed to let me try a Mast Cell Activation Disorder treatment drug and honestly, I'm better now than I have been in 10 years. Amitriptyline was an awful drug for me too, Klonopin was great, but I stopped taking it because of the stigma (I did not have a good primary doc and she went down that old anxiety road.) 

If you really want to get into the thick of it, search PubMed. This is the super library of almost every medical article ever written, it has a search function where you can type in any symptom and condition and read almost every research article for the last 100 years. 

Good luck and good health!

[toomanyproblems]

3 hours ago, firewatcher said:

My neurologist and nephrologist agreed to let me try a Mast Cell Activation Disorder treatment drug and honestly, I'm better now than I have been in 10 years.

Hi Firewatcher, what mast cell activation disorder drug did he prescribe for you? Thanks.

[firewatcher]

toomanyproblems - He prescribed Celebrex in addition to Zyrtec, Zantac and Allegra. Some MCAD patients cannot tolerate it, but we are thinking that I might have prostaglandin issues instead of histamine issues. High dose antihistamines (H2 blockers) and Zantac (H1 blocker) seem to be a first round treatment option, but MCAD can be a super tricky thing.

 

[toomanyproblems]

1 hour ago, firewatcher said:

toomanyproblems - He prescribed Celebrex in addition to Zyrtec, Zantac and Allegra. Some MCAD patients cannot tolerate it, but we are thinking that I might have prostaglandin issues instead of histamine issues. High dose antihistamines (H2 blockers) and Zantac (H1 blocker) seem to be a first round treatment option, but MCAD can be a super tricky thing.

 

Thanks!

[tonimackerz]

Hi all, thanks for your replies, wasn't aware I had any response until now. I appreciate your words of wisdom, unfortunately where I live (England) there aren't a lot of specialists and is not a widely recognised condition. 

On 23/10/2017 at 12:54 PM, yogini said:

There are some meds which help multiple symptoms.  For example when I was on Paxil all my symptoms improved.  I suggested things to my doctor the way vepa did and found multiple doctors who were receptive to that approach.

Yogini, you were given Paxil, did you just ask your doctor about it or did they suggest it?

[yogini]

My first doctor suggested it when I was first diagnosed with POTS and at that time I was reluctant to try an SSRI.  I switched doctors and I suggested it to the second doctor.

[Jojo79]

I live in the UK yogini. I found the nhs to be an absolute disgrace with this condition and ehlers danlos syndrome which I also have.

I had to use my savings to go private. I've seen the best in the field in London. Just trying out a few drugs now. Fludro first but that hasn't helped so need to see what's next. I resent the fact I had to use what little money I had but had no choice. I was hospitalised with awful problems and had no idea what was going on and they referred me to mental health. 

There is an autonomic unit in London. If you are anywhere near there you could asked to be referred. I live in Wiltshire and my gp surgery had to put the request to the ccg to approve the referral to the autonomic unit. Absolute disgrace. I never heard a thing. 

Now I've had the testing done I have a piece of paper that clearly outlines exactly how bad my issues are with bp control, I have named diagnosis of POTS, syncope and autonomic dysfunction. No one can fob me off again with this. No it won't cure me but if I need to go into hospital this paperwork all comes with me. That means something to me following prior experiwnces. The paperwork also went along with a formal complaint to my local hospital!

[tonimackerz]

7 hours ago, Jojo79 said:

I live in the UK yogini. I found the nhs to be an absolute disgrace with this condition and ehlers danlos syndrome which I also have.

I had to use my savings to go private. I've seen the best in the field in London. Just trying out a few drugs now. Fludro first but that hasn't helped so need to see what's next. I resent the fact I had to use what little money I had but had no choice. I was hospitalised with awful problems and had no idea what was going on and they referred me to mental health. 

There is an autonomic unit in London. If you are anywhere near there you could asked to be referred. I live in Wiltshire and my gp surgery had to put the request to the ccg to approve the referral to the autonomic unit. Absolute disgrace. I never heard a thing. 

Now I've had the testing done I have a piece of paper that clearly outlines exactly how bad my issues are with bp control, I have named diagnosis of POTS, syncope and autonomic dysfunction. No one can fob me off again with this. No it won't cure me but if I need to go into hospital this paperwork all comes with me. That means something to me following prior experiwnces. The paperwork also went along with a formal complaint to my local hospital!

Jojo79, that's really awful, I kind of understand what you mean and how awful the NHS is with this condition. Half the doctors I've seen don't actually think I have this condition as they don't believe it's an actual condition. I feel like I'm making things up half the time but I **** well know I'm not. 

Could I ask, did you just pay for the initial consultation and then went via NHS or did you end up having to pay for it all privately? It's a disgrace that we have to pay out when we have a system in place that's supposed to help us which is paid for in our taxes. But without diagnosis, life is miserable. Would be appreciative if you could keep me posted on how your treatment goes. Best of luck

[Jojo79]

I had to pay for all of it. It cost about £2000. I have no money left and am so overwhelmed by the fact the nhs is utterly incapable of helping me. If you can find a place that does autonomic testing near you I would go to your g.p and request a referral. I would massively ham up your symptoms and print off any info that supports the case for this being dysautonomia. You will have to wait no doubt and chase and go back and chase again. 

It is so wrong but this is our nhs now, an absolute joke