Dysautonomia EDS and horses

[Katybug]

I wish they had psychologists that were that specialized in counseling every specialty! It sounds like it could be very helpful now that you explain their function.  

[Kris4444]

I think because the gut/brain connection is so strong that they felt a need to have specialty. They are still arguing over who gets credit for my GP, the neuro (dsysautonomia, damage to the vagus nerve) or the GI doc who specializes in scleroderma (connective tissue issue). I don't care either way as long as we can manage it and we aren't doing a great job of it right now. I'm considering seeing the GI shrink but that's a topic for another discussion. Don't want to hijack the thread! 

[Guest ANCY]

Kris- I hope it works out for you and I hope you will give us all updates as you can. I would agree that it is difficult learning to cope, especially when eating is such a big part of American culture and often GP prevents you from being able to enjoy it. Thankfully my circle of friends and family are very understanding and comsiderate. I hope you have a good base of support around you that can understand your difficulties. 

[Kris4444]

Thanks Ancy. I do have a good support system. Than you! 

[SarahA33]

Kris,

So sorry to hear your going through all this. Interesting about the GI Psychologist.  There is a GI psych at a major University here who is an Gastroenterologist and dually certified in Psychiatry. I read about this at my GI's office - they advertised a study recruiting for IBS within this very specialty.  I know at a major clinic they have an intensive migraine program. It's a 4 week very intensive program, and on top of the migraine specialist, you also see internal medicine, a dietician, a pharmacist, pain management doctor, and sleep medicine after having a sleep study completed. They  have diagnostic testing and physical therapy/neuromuscular rehab consults during this program, too. They also have a portion of the program, which is not optional, spent with a Psychiatrist. They also require attendance in the patient support therapy group, which is led by a Social Worker.  During the psychiatry portion, they use biofeedback, modification techniques, relaxation counseling, and meditation. From my understanding the reasoning behind this is that while migraines are not a psychiatric disorder, but as they start to occur in frequency or become more painful and chronic, or the migraines start to interfere with living your daily life, it may get more difficult to manage and the chances of developing depression and anxiety may go up, which can also worsen existing migraines or cause a new/additional type, like tension headache. So I guess basically in some patients, you can develop comorbid disorders which is reactionary from the initial diagnosis. The program assigns you a health coach that manages your program while your there and follow up care. When I spoke with one, she said Migraine sufferers can sometimes develop a pattern, mostly for coping with the physical and emotional effects, and not always realize it's detrimental. I wanted to attend this program more than anything while my migraines were at their peak. I personally felt if we (myself and current doctors) were missing something that could help to reduce the frequency/intensity and improve my quality of my life then I'd go commit to all aspects of this.

I can see how this gets complicated and scary for a lot of POTS patients since POTS can initially be misdiagnosed as Anxiety. When I first got sick, GI and migraine symptoms were the first to emerge. I had a primary doctor (that I fired immediately)   that told me since I was a young girl in college and working that I couldn't handle stress as well as quote "His son my age". He then proceeded to tell me my BP was high because I was stressing from PMS. Horrible!

 I've had chronic illness management counseling and my biggest concern was that it could affect my current/future treatment somehow. This was some  time ago, but I fortunately had a good initial experience and the psychiatrist was very familiar with stress hormones, like catecholamine's. He recommended that I be tested for a pheo since my NE were quite elevated and people often have associated secondary anxiety from the adrenaline surges from the primary condition. I hope I explained that right, lol. . He also diagnosed me with anxiety and said many of the POTS symptoms are severe and possibly adrenaline fueled. Anyway, just my experience. One of the most important things DINET focuses on is raising awareness among physicians and hoping to reduce the diagnosis time, misdiagnoses, before correctly identified and promoting knowledge of autonomic system to both patients and doctors.

[Kris4444]

I had a PET scan looking for a pheo but it was negative. How sad that I was going hoping they would find one. I too have high levels of norepinephrine and dopamine. The beta blocker nadolol has helped a lot with my heart rate and high bp.

[SarahA33]

I am so relieved for you, Kris that the nadolol is helping. It's about time you've caught a break.   I know that feeling all too well that you describe, it's basically like you don't want them to find anything  wrong with you in their testing, but at the same time you hope something is found that can be removed, fixed. etc. It's really terrible and confusing when you have this thought process.

[Kris4444]

Thank you Sarah.