Psalm 23

I'm sorry TCP. Your situation sounds very frustrating. It's so awful when you feel as if your symptoms are ignored. I can't imagine why they would question a PoTS diagnosis if you meet the ttt criteria and complain of pertinent symptoms. I would question my Cardiologist about how it was she came to the conclusion that she did in terms of her diagnosis and have her explain what Postural tachycardia but no overtly PoTS syndrome means exactly. There seems to be a communication break down here. This doctor needs to explain her position. Like Katie I am unfamiliar with navigating your health care system but here in the states many would seek another opinion if a conflict arises.

Postural tachycardia would be just an elevated heart rate upon assuming a standing position where as PoTS (syndrome) would also include complaints of symptoms of dizziness, nausea, shortness of breath etc.. Typical PoTS symptoms. Did you experience these symptoms in addition to tachycardia when your ttt was done ? The nurse usually asks how you are feeling during the procedure.

Glad to hear you have an appoinment at Vanderbilt gjensen. You should hopefully get some answers there. Let us know how it goes.

Hi alicia,

I'm so sorry you are dealing with such frightening and restrictive issues. It must be a terrible way to live. I'm sure you could relate to Crystal's situation. You're right in that she is on an enormous amount of medication. One can't help but wonder what kind of negative effects the medication might be causing. It's amazing she is able to tolerate them all. It sounds as if the builder of the house will be consulting with Crystal's doctor on suitable building materials given her condition. I posted a link above for the interview if you wanted to watch it again since you missed some of it.

Yes. I wish her the best as well.

http://www.thedoctorstv.com/articles/2944-woman-allergic-to-the-world.

I found it on one of the mast cell forums earlier and watched it. What a difficult existence for this young lady. While it's nice to see some attention brought to this disorder it's unfortunate that the description of mast cell activation syndrome/disorder was inaccurate. The comments following the interview are interesting to read. Someone does correct the inaccuracy. Thanks for bringing this to our attention alicia.

Janet

No. I missed it. I'm sure it must have been interesting.

Hello everyone and welcome.

Hi gjensen. My EKG's in many years past used to show a right bundle branch block as does my fathers but then my right bundle branch block abnormality spontaneously disappeared and was replaced by a left axis deviation abnormality. That abnormality now shows up every time. Mayo required a cardiac MRI which showed scarring in the upper septum of my left ventricle. I guess the scarring could interfere with conduction. Do you have any echo abnormalities as well ? Mine used to just show moderate mitral valve regurgitation which is an old finding but now the last two echos show moderate pulmonic valve regurgitation as well. It can all be a bit disconcerting I know. I hope you get this sorted out. I'm sorry you're not able to tolerate the Norvasc.

Janet

You're welcome Di. I'm so sorry you had such a bad day yesterday but glad it motivated you to initiate some positive changes. We really do have to be our own advocates and as proactive as possible. Don't leave any stone unturned. I'm really glad you found this forum. There is much support here and information to be gleaned. I spent way to much time in the dark seeing doctors who misdiagnosed me, prescribed the wrong medication, gave me inaccurate information, were just plain rude and unprofessional. I could go on and on. I still get angry when I think about it all as it went on for a long time. I talked about it recently with my current Cardiologist who is wonderful and trying to learn more about my various issues. I do have some cardiac issues but I mostly see him to update him on anything new my Mayo Neurologist orders so he can be my back up at home if any problems come up. It is truly amazing how many doctors many of us have had to go through to finally get correctly diagnosed and managed. I'm sure I probably suffer from Post Traumatic Doctor Disorder as well. I'm trying to move forward now though and get past that dreadful season in my life. That's great that you are going to OHSU and getting a ttt done. Having it done by a Mayo trained Neuro is super. Hopefully they can do the full test. It is nice to have testing and followup closer to home but at least you know where to go if they don't have it available. All my best to you on your journey. Keep us posted on how things are going.

Janet

Hi Di,

I can totally relate to your anger as I experienced the same thing. My former Cardiologist did a poor mans ttt and told me I had PoTS and I did not need a ttt. He said he had diagnosed me with it several years earlier. Such an arrogant little man. Geez. I didn't even know what PoTS was. He had sent consults over the years to my Internist with that information who then never discussed it with me. I had been on the wrong medications, getting worse and told there wasn't anything left that could be done to treat my condition. After doing my own research I realized I needed to see a dysautonomia knowledgable Neurologist and got a referral to Mayo Clinic. One of the first questions the Neurologist asked me was did I have a ttt done. I said no and he said how do you know you have PoTS then. I felt a bit silly when I said because that was the diagnosis my Cardiologist had given me. Having a ttt done is a very important diagnostic tool whether it's for diagnosing a b/p or a heart rate issue. Having a Cardiology ttt is much different then having a Neurology ttt though. The former is significantly longer and many times involves a drug infusion where as the former is only 10 minutes or less and does not typically involve medications. If possible the best approach is to have a full autonomic reflex screen. For me having a thorough evaluation done at Mayo, AZ was life changing. I am also on disability and am constantly aware of the need to follow up on any physician recommendations and keeping good records. Hold your ground if you feel as if something is not being done that should be.

Janet

Like you I am on a large number of medications for MCAD which improves my PoTS symptoms as well as other issues. I am also on Clonidine (0.05mg bid ) which is an alpha blocker. At one time Ivrabradine was under consideration as an add on medication by my PoTS neuro so I guess he was okay with combining an alpha blocker and Ivrabradine. Of course the risk with an alpha blocker is a lowering of your blood pressure. In my case I have a very labile blood pressure but was prescribed Clonidine because of a very hyperadrenergic component to my neuropathic PoTS. I see that both clonidine and prazosin can potentially help with PTSD nightmares but like everything else have side effect risks to be considered. As was already pointed out beta blockers are generally contraindicated for mast cell issue patients. I experienced severe chest pain when tried on a beta blocker. I hope you find something that helps.

Janet

Hello everyone and welcome to the forum !

I'm so sorry your appointment was not very productive gjensen. I hope the Norvasc proves helpful. I would definitely follow up with the recommended allergist and autonomic neurologist when you're up to it. It's amazing the number of docs we have to go through to end up with an effective treatment plan. Hang in there.

I'm really sorry to hear that Tyler has the flu on top of everything else. How awful. I probably missed it in one of your other posts but has Tyler been evaluated for MCAD ?

Hello Bridgerunner and welcome to the forum !

Hi Rachel,

Thank you for posting these fascinating articles. I learned a lot of things I did not know. What an enormous amount of material to digest. Keep us posted on how Tyler does on DAO. Rather then sacrificing healthy unfortunately high histamine foods it's certainly worth trying this approach. I guess repeating histamine lab values will reveal how effective taking DAO is for Tyler. I hope it proves an effective approach.

Janet

Hi gjensen,

I'm so sorry to hear of your struggles. I used to have a lot of problems with sharp intermittent left sided chest pain which worsened enormously when I was placed on beta blockers. It turns out the pain may have been mast cell related because now that I am on MCAD treatment I no longer have any chest pain. MCAD is definitely worth pursuing as a possible diagnosis. Best of wishes to you at Vanderbilt.

Janet

I went gluten free quite a while back and found that it improved my neuropathic pain and GI issues. It is definitely worth trying. I use almond milk as well. The unsweetened vanilla one or the unsweetened plain one depending on what I am using it for.

Hi Dizzyallie,

I was prescribed Zyrtec along with Allegra, Pepsid, Aspirin and Cromolyn as treatment for Mast Cell Activation Disorder which for me may be one of the driving forces behind my PoTS symptoms. This regime has resulted in significant improvement in my PoTS symptoms, brain fog, GI issues, flushing etc. The list goes on. To better control my PoTS symptoms however I am still on Clonidine and Mestinon. In addition to medications trigger avoidance is a huge consideration for one with mast cell issues.

Janet

Welcome !!!

Congratulations Writerlymom. A SSD award is definitely cause for celebration. I know I did many years back. As has been stressed supplying records and very thorough documentation with attention to detail is key. I hope you'll be on the road to improvement soon.

Take care,

Janet

Since this poll has been resurrected I'll provide an update. While I found wearing compression hose to be extremely helpful I ultimately had to give them up because over time I started to develop unbearable burning pain to my skin while wearing them. I guess that would be considered mechanical irritation. A trigger to be avoided for MCAD patients. I do however still wear my abdominal binder. Don't know what I would do without it. Compression garments can make a huge difference for some people. Definitely something to at least try.

Janet

Hello Dyspatient and welcome to the forum. Thanks for sharing. I know only too well the frustrations of dealing with a long and complex medical history and with doctors who are unable to correctly diagnose and treat. Hang in there though. Your persistence will pay off in the end. It did for me. Best of wishes to you on your journey.

Janet

That's an interesting question. I had severe endometriosis and infertility issues in my 20's which required two surgeries. A number of years later I end up with a PoTS, MCAD and EDS diagnosis. I have also read articles discussing a connection between MCAD and endometriosis. I haven't read anything specifically connecting endometriosis with dysautonomia however. I'm sorry you are having to deal with this painful issue.

Janet

I finally had a chance to read through the articles. Thanks for posting them Issie. The information presented is very interesting but rather disconcerting for those positive with that protozoa considering it's permanence at present. Certainly one can see the impingement on blood flow those biofilms can potentially create. How fascinating that the researchers/physicians were able to determine that the protozoa thrived on fat and that a low fat plant based diet could result in an improvement in condition. It will be interesting to follow new research coming out of this.

In addition to continuing with a vegan diet for life will low dose antibiotics and antimalarials ( herbal or otherwise ) be long term necessities ? Is Dr. G. open to any of this ? I just wondered how open minded he was. I also believe that many patients diagnosed with FMS have EDS, which could be the source behind the pain. I'm sure there are a number of different subtypes. There is of course the connection between MCAD and fibro and then there is the large percentage that actually have small fiber neuropathy.

In any event I'm very happy for your improvements. I have been on a very long journey as well and am now seeing light at the end of the tunnel.

Janet