babettess

I recently started working with a physical therapist to help with chronic pain that I have from two car accidents, fibromyalgia and most recently the chest pain from POTS. I was very impressed when I first met him as he has experience working with people with POTS. (I live in a very rural area and even the largest teaching hospital/university near here doesn't even know how to treat POTS.) In the two weeks that I have worked with him, I feel better than I have since I started getting ill over 7 months ago. He has me doing exercises to "desensitize" my nervous system. These consist of simple stretches and some balance work while sitting on an exercise ball. He does some lymph drainage work and some massage on my neck/shoulder area. I have had less pain in my neck/shoulder area than I have had in probably 10 years. The neck pain/tightness and chest pain/tightness are so much better and have actually been gone for about a week. Most importantly though is that I haven't been as POTSY lately. He has explained where my pain is coming from in each of the affected areas and even figured out why I have been having a tightness in my throat like I'm being strangled. I have actually been using the wrong muscles to breathe with when I'm talking. So I have been practicing using the correct muscles to breathe while talking and talking less to give the muscles a chance to feel better. My husband loves the explanation for that- He's always known I talk too much! Well I've always known that too......Guess I think I have alot that needs to be said..........Believe me if this was radio you would know what I mean..... Anyway my question is- Could this physical therapy actually be helping me or am I probably just going out of the POTS flare that I've been in? I would love to think that something is finally helping. It's been so encouraging to be able to get up and do some really big things like cooking, laundry, driving to PT and actually a little work!!! And being pain free is quite a blessing!!

I have times when I can't seem to get my "swallower to swallow". To me it feels like I can't get my mouth/throat/tongue or whatever to cooperate and perform the swallowing action. It happens to me mostly with liquids. I have told several drs. about this and they can't seem to tell me what's wrong. I am very careful when eating or drinking as I have choked before and certainly don't like that sensation. Best wishes for help with this very annoying problem. Let us know if you learn anything about it. Always smile, Babette

Hi lizzyp, I don't have any experience with cruises, but the fact that you mention that you think it would be fun makes me think you should try it. Of course you should plan appropriately and make sure you have a stong support system with you. Call and check out the cruise line to see if they have a physician on board at all times. Make sure you take your most important medical records with you- just in case. Take extra medicine and pack it in several different places. That way if you lose one piece of luggage you will still have plenty of medication. Remember the heat bothers some people with POTS so you might have trouble if you are going to a very warm climate. Make sure air conditioning is readily available. Take time to consider all your symptoms and have a plan to help ease them if they should become worse during the trip. Prior proper planning!!!!! I think an important thing to check out first is how your family will respond if you happen to go into a flare while on the cruise. Do they provide strong support to you while you are feeling poorly? Will they still be able to go do the scheduled activities if you are hanging out in the room because you need a break? Or will they become angry and resentful?? If they are willing to modify their activities to accomodate how you are feeling, then I say give it a try. Ultimately you all want to have a good time. . Of course, your physician should be consulted to make sure he/she feels like a cruise is a good idea considering your diagnosis. I hope if you decide to go that you have a wonderful, relaxing, rejuvenating time!!!! With smiles, Babette

4everOptimistic, Thanks so much for letting me know how your appt. went. Were you already diagnosed with POTS or were you going to Cleveland to get your diagnosis? Also, if you don't mind me asking, what tests are they scheduling you to have? I already have a POTS diagnosis confirmed by a TTT, but I don't know what type I have. I'm just wondering what all tests they do and if they are to confirm POTS or maybe determine what type and what is causing it. Thanks so much! Please let me know how your testing goes. With smiles, Babette

I have appts now at Cleveland Clinic and Columbia, MD both. I can get into Cleveland 2 months sooner than the doctor in Columbia so I don't know what to do or where to go. Input please. Thanks, Babette

Thanks so much ptalaura! I am hoping to find a dr willing to at least listen to my concerns. His office said that a first appointment is 1 1/2 hours long. That's by far longer than any appt. I've had so far. I'm glad you are pleased with your treatments. Do you live in MD? I am from the "countryside" of Western MD. Babette

I have been referred to the Cleveland Clinic for evaluation and management of POTS. Has anyone else been there and if so, what was your experience?? I already have an appointment scheduled with a doctor in Columbia, MD. John Hopkins doesn't treat POTS but gives this doctors name and phone number out if you call them for information on POTS doctors. I can't get in there until May. If I can get in earlier at Cleveland I will take that appointment. (Columbia is about 3 1/2 hours away and Cleveland is about 5 1/2. Either place will make for a long drive.) I would just like anybodys opinion on either of these options. Thanks so much for your input. With smiles, Babette

MCAD and visit to NP- I went to my favorite NP today and she ordered an ultrasound of my carotoid arteries and a MRI of my neck/throat. I had not read some of the responses to my post or I would have asked her about the MCAD. She is soooo willing to hear anything I have to offer and she even admits that she had never heard of POTS until I was diagnosed. She actually appreciates that I am taking an active role in my health and doing some research on my own. And I got what I was hoping for.......She referred me to physical therapy for my neck pain and she also referred me to a doctor that treats POTS to get a second opinion. My current cardiologist is who dx'd me and although I really like him, I think he should have done more testing. I was not told what type of POTS I have or what it might be caused by. I am hoping to get some answers through all this new testing and by seeing a dr who treats POTS. I have been on a beta blocker for over 20 years and always feel worse off of it. Although the chest pain & tightness and feeling like I'm being strangled started two days after starting metoprolol (after it was changed from Atenolol). Interesting?!?!?! I tried a calcium channel blocker once about 18 years ago and again about 5 months ago and both times it made me extremely ill and did not help with my heart rate. Should I keep my eye out for any particular symptoms that would indicate a need for further testing for MCAD? My blood pressure doesn't ususally change much when I stand up and I have never noticed facial flushing other than having roseacea. Another interesting fact is that I feel much better after taking either Atarax or Benadryl. I always thought they made me feel better because they also have a calming effect. I mentioned this to my ENT doctor and he did some testing for allergies (RAST and IVIG, I think.) But all the testing he ordered came back normal. Thanks for all of the responses. It's so nice to no longer be alone in this!!! With smiles, Babette

Thanks for the responses! I have had a brain MRI, modified barium swallow, TTT,nerve conduction tests, EMG, VNG, chest CT scan to r/o pulmonary embolism, abdominal & pelvic ultrasounds and have given probably gallons of blood. Other than the vit D defiency, high pm cortosol, my nerves firing "very well", not being able to form a "bolus" as determined by the mod barium swallow and of course positive for POTS from TTT-everything comes back normal. The ENT says see Neuro, Neuro says see ENT and so on. I have not been to Johns Hopkins yet, though. I am going to see my favorite NP tomorrow and maybe see if she thinks Physical Therapy might help . When the muscles are calm in the front of my neck so is the swallowing difficulty and the chest/neck pressure that makes me feel like I'm being strangled. I will also ask her about GERD although I think it would have shown up on the modified barium swallow. Thanks again for the responses. I'm thrilled to have found this forum! With smiles, Babette

Hi everyone, I am new here and so anxious to interact with other people with dysautonomia. I was recently diagnosed with POTS and am at least no longer bedfast (at the moment). I spent 3 months unable to get out of bed without help. It took about 6 months to get the POTS dx. I guess I was dx'd earlier than many people are. I am just starting treatment and am hopeful that I will feel even better! My tachycardia comes and goes as does my shortness of breath, dizziness, off-balance feeling, headaches, brainfog, shaking, inablility to stand and exercise intolerance. I have found the chest pain and pressure, neck pain, a feeling of being strangled, and being unable to get my swallowing action started the most bothersome symptoms on a day-to-day basis. I can't seem to get any of the doctors to get past the thought of my swallowing difficulty and feeling of being strangled as anything other than anxiety. I do have panic attacks on occasion but am not an anxious person at all. The swallowing problem is something I have had as long as I can remember. The dentist I saw as a child gave me exercises to do to try to improve my swallowing. I have problems getting the swallowing action to happen when I try to drink liquids. Not good for someone who needs to drink lots!! I also choke easily on liquids and even my own spit. The neck pain I feel is all around my neck but when the front muscles of my neck hurt the worst, the swallowing difficulty and the strangling sensation are at the worst. What I would like to know is if anybody else feels this, if they have ever been told what is making this happen and what type of a doctor made the dx??? Are these POTS symptoms?? I have seen neurology, endocrinology, ENT, cardiology, and a dentist. I have had a modified barium swallow. I was given Xanax for the neck tightness and stranglulation feeling but it did not help at all. Personally I think the muscles closest to my carotoid arteries are tight and are causing these sensations. I also wonder if my vagus nerve and my glossopharyngeal nerve have pressure on them from the tight muscles. I read somewhere that damage to the vagus nerve or carotoid arteries can cause ANS problems. Any input will be appreciated as my doctors seem to be at a loss. Thanks for taking time to read this. I look forward to making new friends on here. Having people to talk to that are experiencing the same life as me will be such a blessing!! With smiles, Babette