sandymbme Posted January 5, 2008 Report Share Posted January 5, 2008 My journey with POTS started in June of '07. I had been feeling run down and suffered from intermittent dizzy spells, but I was working 6 days a week at a retail department store to pay for my July wedding. I had a migraine that just would not go away for two weeks straight and my fiance took me to the emergency room when the pain became completely unmanagable. The ER doc said that I had low-lying crerbellar tonsils on the MRI, and that I should share my chart and the MRI with my neurologist. The neurologist initially diagnosed me with Chiari malformation, and sent me to a neurosurgeon for a consult. Before seeing him the headache did finally fade away on its own, and on 07/07/07 I very happily married my wonderful husband. After returning from our honeymoon, and much to my dismay, the headache returned on august 12th. (My birthday, ironically.) On August 24th, the pain level skyrocketed to such an intensity that my vision disappeared while I was on the sales floor at work. My boss called the squad, and I was admitted for a course of DHE. I was released three days later with no real improvement. Unable to return to work, I went through a gamut of tests that led the neurosurgeon to conclude that my cerebral spinal fluid flow was not impaired and I was not a surgical candidate. He recommended I find a headache specialist to consult with.Where I live my only reasonable option was the Cleveland Clinic, and even that is a two and a half hour drive. The doctor at their headache clinic immediately suspected POTS, and recommended a tilt table test at their Syncope Clinic. But my neurologist thought that would be "overzealous" and implied I would be foolish to do it. By november I was desperate for relief to my pain, and had no success with any treatment, so I scheduled the tilt table test on my own. (Hooray for my PPO!)Sure enough, mine was a clear case of POTs. I have since canned the crappy neurologist, put together a new medical team, and am trying to learn how to cope. Thus far we have been unable to stabilize my symptoms, but I am hopeful the addition of lopressor to my prescription regime will bring improvement. While this is far from the picture of newlywed life I envisioned, I am singularly blessed in that my husband is my unfailing support. He has been to every doctor's appointment, and comforted every tear. Iam so grateful for this forum, it has made me feel so much less isolated with a condition I had never previously heard of. So thank you so much to everyone that makes it such a great resource! Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 5, 2008 Report Share Posted January 5, 2008 Welcome, Sandyshell! Sorry you've joined the ranks of the POTSies. We're a friendly group, however, so it could be worse!I'm glad you have your husband to help you cope! That certainly helps!Amy Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 5, 2008 Report Share Posted January 5, 2008 Hi,Welcome aboard.Congradulation for your wedding. Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted January 5, 2008 Report Share Posted January 5, 2008 Hi Sandyshell-- welcome!Has your headache pain lessened since your POTS diagnosis and new medications? It's so hard how our illness changes the way we "thought life would be," isn't it? Glad you found us here. Kristen Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 5, 2008 Report Share Posted January 5, 2008 Welcome sandyshell! Glad you are making some progress with the doctors. It always seems to take a bit, but hopefully you will start feeeling better very soon! Congrats on your marriage! morgan Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted January 5, 2008 Report Share Posted January 5, 2008 Hello, and welcome....I know how you feel with the migraines, I was like you and had them for a long time straight before being diagnosed, I had a migraine for about 5 months straight before I was finally diagnosed with POTS and began to feel some relief after starting treatment, I hope you will feel some relief as well, in due time, best of luck, and welcome to the family! Mary Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 5, 2008 Report Share Posted January 5, 2008 Welcome home sandyshell! Isn't it nice to go where everyone understands.It is wonderful that you are a happy newlymarried person. I wish you and your husband a lifetime filled with many good times, fun adventures and quiet cozy moments. ( I am a romantic sap and have been blessed with a special soulmate/husband for many years. It is always refreshing to hear when two loving people decide to spend their lives together.)Anyway, just know you sound like you are equipped with the right attitude and that is 3/4 of dealing with this stuff!best regards,tearose Quote Link to comment Share on other sites More sharing options...
sandymbme Posted January 6, 2008 Author Report Share Posted January 6, 2008 Thanks so much for the warm welcome! It's not where I would have chosen to be, but I can't imagine going through this confusing and frightening time without this resource. There are so many things that made so much more sense after realizing they were just part of my condition. I don't know why, but just knowing my wide array of symptoms are "normal" make them much easier to bear.As of yet I have had no significant relief from my headache, but I am cautiously optimistic that the lopressor I started about a week ago is giving me some relief from the rest of my symptoms. With any luck it will get everything under better control. And if not, then on to the next med. So thanks again for the warm welcome! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 6, 2008 Report Share Posted January 6, 2008 Sandy,Welcome! I hope you find a great source of help and support here! I hope that you soon find some help for your headaches/migraines! I can not imagine having them more than a day or two. It must be awful. I am sure you have tried everything. I hope you can find something soon to lessen your symptoms further.Welcome and Good Luck! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 6, 2008 Report Share Posted January 6, 2008 Sorry we have to meet here but welcome aboard. I too get very bad migraines and POTS. My headached neurologist told me the best thing to treat a migraine is not to get one. I have been on a vigorous medical regime to prevent migraines and happy to say it has been working. Before last year, I was taking mestinon, neurontin (3600 a day), zoloft (250). Now, I am still taking mestinon tr, zoloft but have switched to Lyrica 150 twice a day. Both my POTS specialist and neurologist believe that Lyrica is a "cleaner" drug than neurontin. I have also been told that the SSRP Zoloft needs to be taken at a high dose to help with POTS and migraines.I also have a plan in place to deal with a migraine once I feel it coming on. Maxalt with percocet works best for me. Then there is DHE nasal spray/injections, etc, and finally a trip to the hospital for DHE IV. So far, I've made it to step 4 (no trip to ER) for very bad headaches.good luck! Quote Link to comment Share on other sites More sharing options...
PattiL Posted January 6, 2008 Report Share Posted January 6, 2008 Hi Sandy,Welcome to the club! I don't know who you saw at CCF, but Dr. Robert Shields (Phone: (216) 444-0855) is a neurologist there and an autonomic specialist. There are a few on the board that I believe have been seeing him regularly. Chrissy had her first appt. with him in early Dec. and we are seeing him again this Thursday. Chrissy's regular POTS Dr. is Dr. Grubb, but since we only see him once a year (and his PA, Beverly, in between those visits), we thought it would be a good idea to get someone closer who is also familiar with Chrissy/POTS. He takes his time with your visit, listens and actually understands what she's going through.I hope you find some relief soon. This is a wonderful forum and full of valuable information.Patti Quote Link to comment Share on other sites More sharing options...
runningshoe Posted January 6, 2008 Report Share Posted January 6, 2008 Hi Sandy,I was diagnosed a little over a year ago. Give yourself some time to figure out what you can and can't do, what helps and what doesn't, etc. You will have some ups and downs but hopefully with the salt loading etc. you will see an improvement. I have found this forum to be helpful and comforting. Many of us look well on the outside so it is hard to find support from those around us. Hang in there. Quote Link to comment Share on other sites More sharing options...
Eillyre Posted January 12, 2008 Report Share Posted January 12, 2008 Just chipping in my own cheery welcome, Sandyshell! Glad you found us!Angela Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 12, 2008 Report Share Posted January 12, 2008 Welcome Sandyshell!Thanks for joining us, and adding your story. You'll find a ton of educational material in the forum, and the other web pages which will help answer many of your questions. It's no replacement for your doctor of course, but it helps get us though many rough times.I'm also very fortunate to have a very supportive husband, and he also tries to make it to every appointment----especially new doctors. Dr. Grubb is my POTS doctor, and that is the only appointment I usually go to on my own, as I have a lot of trust in Dr. Grubb. He always takes his patients seriously, and does the best he can to treat our symptoms.As you can see on my signature line, I have other co-existing health problems, and Dr. Grubb thinks my POTS may be secondary to the EDS and spine instability issues. It's hard to tell for sure though. I'm fortunate that I don't have crippling headaches, but I have a lot of pain. My headaches are always near the back of my head, and associated with my cervical/cranial instability.Make sure you have a good neurologist to also watch any neurological symptoms outside of your usual POTS issues. Wishing you the best, and keep us updated on how your doing---- Maxine :0) Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 14, 2008 Report Share Posted January 14, 2008 Sandyshell, I'm sorry you have to join the club, but welcome! I'm glad you found us and I hope you find this place to be informative and caring. Rachel Quote Link to comment Share on other sites More sharing options...
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