Psalm 23

I experience a great deal of heaviness in my legs when trying to walk. It feels as if I have exercise weights strapped on. I have tripped and fallen because of not lifting my feet high enough. I also have balance problems and weave as if intoxicated. I'm sure I look a bit odd when walking. I live in California as well and unless we experience a significant earthquake I am not aware of the smaller ones that others are aware of. Which is maybe a good thing. I also experience the intermittent feeling of heaviness over the chest as well as other respiratory discomforts, air hunger etc. Some literature suggests thoracic hypoperfusion as a possible reason for the respiratory symptoms and blood pooling in the lower extremities and general fatigue might be a few of the reasons for the leg heaviness ( stuck in quicksand feeling ) and some of the other walking problems. Certainly nerve damage is another possibility. Janet

Sutherngal I realized after rereading your post that you did not have the most satisfactory appointment with your Mayo Neuro and I should not have asked who you had seen. In regards to neurontin as a possible treatment for the vibration feeling, I have been on and off neurontin since 2006. It was originally prescribed for shingles pain but I now take it for what is most likely neuropathic pain. Taking it has no effect on the buzzing/vibration feeling what so ever. I hope you find something helpful. Janet

Yes Suthrngal. Which neurologist did you see at Mayo ? Janet

I realized I have may have misspelled Dr. Goodmans nurses name. It's probably Janey but I will have ask next time I talk with her. She is such a kind patient soul I wouldn't want to minimize her in any way. Janet

Ashley I am so sorry for the loss of your father. I can't begin to imagine what sadness you are going through right now. Such a dreadful thing to have happen. My thoughts and prayers are with you. Janet

I do not sweat at night as I have a sweating defect but I do always wake up in the morning feeling dehydrated and very potsie in spite of consuming large quantities of fluid during the day. What helps me over the morning hurdle is to put on compression garments, drink 20 oz.fluid, salt load, take prescribed medication and just sit on the couch with my legs up for a while until I feel ready to move. I find for me doing things in a gradual and slow progression allows my body to adjust to the forces of gravity. Janet

Suthrngal I wont actually know until after Jan. 2. Scheduling dept. told me they can't schedule any of my appointments or tests until they have record of my insurance change. Since I am already an established out of state patient of Dr. Goodman I hope it wont take too long to get in but at this point I really have no idea. Since my last visit to Mayo I have been afforded the most amazing telephone support so between talking to Janie ( Dr. Goodmans nurse ) and having numerous questions answered by Dr. Goodman and having my chart updated that should I hope make things move along somewhat easier. In the meantime my Rheumatologist and Cardiologist here in California are trying to help me as best as they are able. I will definitely update you when I have new information but I'm afraid it will be a while. Janet

That's wonderful news margiebee. I'm so very happy for you. It's such an encouragement to others that recovery is possible. Enjoy moving forward with your life and continue applying all you have learned to reach this point. Janet

Thank you Alex. January does seem a long way off but the time seems to be passing quickly thankfully. I'm wondering if anyone else has other new or worsening symptoms since developing this buzzing problem. In my case my pots symptoms have been steadily worsening as have been symptoms of a very painful small fiber neuropathy and symptoms of mcad which are the main reasons for my need to return to Mayo so I wonder if there is a connectedness to any of it. I have read about a buzzing feeling being associated with small fiber neuropathy. I can't think of any potential triggers to associate my buzzing/vibration feeling with. My initial thought was maybe it was related to NE surges but it does certainly feel like little overactive nerves. I can just picture them at work. Hopefully it will be just some odd temporary annoyance for all of us. Janet

That's awesome. I'm so happy for you SnowDrifter. It's fantastic to hear about such a huge improvement. Thanks for sharing. Will look forward to hearing more when you've had time to recover. Janet

Yes. This has become an increasing problem for me. It started in my legs about two years ago but has since spread throughout my entire body. It is intermittent and feels like a low level vibration or buzzing. It is as if my body has turned into a human beehive with thousands of bees buzzing around inside. It is not painful but very disconcerting just the same. I have not yet found anything that helps other then to just try and tune it out as with all the other annoying problems that have cropped up. At present I have no idea what this problem is all about but hope to have some kind of answer after my return visit to Mayo Neurologist which unfortunately won't be for a while as I made a really bad decision earlier this year in not switching insurance and will not even be allowed to make a Mayo apt until Jan 2, 2014. I would love to hear what kind of explanation anyone else has been given by docs about this problem and what might possibly relieve it. Thank you. Janet

I am also challenged with a low sensory overload threshold. I have significant problems with light, noise and motion. Over time I have learned ways in which I can tune out or adapt to some of the overload although not to the point where I feel comfortable in any setting as I once did. I used to be a labor and delivery nurse and thrived on the type of environment I now have a difficult time tolerating. It is all still such a weird and alien feeling to me but it has to be dealt with in one way or another. In any event, I do avoid or limit overexposure to stressful environments and events as much as possible, I have just walked out of places that were too stimulating, I use relaxation type breathing, I use earplugs sometimes, I wear sunglasses a lot, the list kind of goes on. You start to figure out different things that will help increase your tolerance level. I'm sorry for everyone else that struggles with this problem. It is immensely frustrating I know. Janet

Hi Wendy and welcome to this forum. I'm so glad you found it. You will find this a very supportive, informative and encouraging environment. Thank you for sharing your story. I know it can be such a long and frustrating journey trying to get the correct diagnosis and treatment. I'm all about being proactive so continuing on in your quest for information and knowledge in how to best manage your symptoms and improve your functionality is so important. That's great that you have such strong family support. I do as well and am so thankful for it. I hope you continue to find more answers and the help you need. Janet

Yep. I'm with you all on the noise sensitivity issues whatever the source. Can definitely take the fun out of firework viewing or any other activity that produces noise. The intermittent adrenaline surges can be so nerve rattling, pain producing, exhausting etc. I have found wearing earplugs to be helpful for some things though. Oh, last year I watched a great firework display on TV. Janet

I am also greatly challenged by brain function issues which does seem to be a pretty common complaint amongst others on this forum. I notice a huge difference in my ability to converse or just perform any tasks requiring thought whilst in a standing position versus a sitting position. My family will say to one another to wait and talk with me when I am sitting down. They don't usually have to wait too long because there is of course a limit to the length of my standing time. I notice memory is also more frighteningly impaired when in a standing position so I can not help but believe that in light of all of this that cerebral hypoperfusion is responsible to a degree for some of these problems. I'm sure there are many other contributing factors as well. My brain dysfunction issues are not just limited to when I am standing just much more apparent to me and others around me. I'm sorry you are having to deal with these issues as well. Janet

If you google or do a search for autonomic neuropathy a number of different sources of information on the subject will be available. The extent and severity of impairment is dependent upon how limited or extensive an autonomic neuropathy problem you have.

Yes. Is definitely the case for me as well. Allow plenty of time for recovery. I was also told by my Neurologists nurse that it's not uncommon for there to be a several week or longer recovery time involved for pots symptoms to settle down post viral infection. Take care. I hope you feel better soon. Janet

I have a very labile blood pressure which can be anywhere between 80s/50s to 200/110. I definitely feel the most potsie with the lower end b/p numbers but can still have pretty significant pots symptoms with any of the other numbers in between as well. I do have a diagnosis of autonomic neuropathy but that diagnosis does not always accompany a pots diagnosis and a fluctuating blood pressure. Autonomic reflex testing would have to be done to make that determination. Janet

Kat I also have with the help of medications a controlled heart rate and a somewhat controlled blood pressure but that did not make as significant an improvement as I had hoped for with regards to my pots symptoms. I think largely because the tachycardia and blood pressure changes are just a response to a much more complex problem. I have found though that wearing compression devices has made a big difference. Janet

That's so awesome. I'm really happy for you POTLUCK. Thank you so much for sharing your improvement with us and being an encouragement. Janet

Thanks so much Alex. I really appreciate all the information you seek out and share with us. You're an angel. I'm still enjoying my gluten free diet. I will look forward to trying some new recipes. Janet

Napping makes me feel much worse as it interferes with my already poor night time sleeping pattern and the worst nights sleep I get the worst my pots symptoms are the next day. I generally require a lot of rest breaks throughout the day but if I can avoid actually falling asleep I do. Of course everyday is different so some days I achieve my goal of not napping and other days not. I think like in everything else everyone with this condition benefits from such different things. Janet

Thanks for the posting Alex. This approach makes so much more sense especially for those of us that have a combination of all of the various subtypes. Janet

Wow. That's awesome. I'm so happy for you. I decided to go gluten free several weeks ago and have felt better for it. I have been juicing a fruit and vegetable mixture for while but it doesn't have cabbage in it. I will have to try adding that as well. Thanks for the information and encouragement. Janet

It would appear that in the realm of hyperpots there exists different subtypes and very individual treatment plans and responses. From what I have read lately the prevailing thought seems to be that most hyperpots patients are hypovolemic. For myself, the recommendation was a starting point of 6gms of salt and 2.5 liters of fluid daily. I do benefit from it in terms of some symptom reduction. In regards to foods and diet I follow a very specific diet as outlined on my profile and have found it to be helpful for me. Dietary fats are my worst enemy as they increase the workload of the stomach, slow down digestion and cause what I perceive as postprandial pooling which is miserable and results in a diversion of blood away from more vital places. As far as problematic medications go I was told to discontinue elavil as it could worsen my pots symptoms. Additionally any medications that had a diuretic effect could be problematic. I was advised to replace lisinopril with clonidine. In the end it's still trial and error even in the hyperpots crowd as we all have such individual needs, responses and reasons for our condition. I wish I could be of more help. So sorry your son is not improving. I hope you get some answers with his next lab results. Janet