Adria

Thank you so much for all of your replies and advice. It makes me feel so much less alone with this migraine situation. I woke up with a really bad migraine at 3am that just would not go away. I think that lack of sleep is my trigger right now. I'm not sure what is keeping me awake but between all the rain and the lack of sleep my migraines are going crazy. I tried the fiorcet and it did not touch the pain at all. It just made me feel dizzy. I was started on benadryl and ativan for sleep and it still is not working. My doctor says that I may have to resort to sleeping pills soon. Something has got to break this migraine cycle. I have to use phenergan just to keep food down. I called my neurologist and she finally wrote me a prescription for 15 percocets because narcotics are the only option at the moment. I know she may not like to prescribe them but I have been kind of stuck for a while now. I really appreciate the advice and having this forum to vent

I went to the neurologist today and she informed that the only thing that she can offer me for my migraine headaches is fioricet and some physical therapy for my neck. She is not comfortable prescribing the narcotics that my previous neurologist and primary care doctor have given me in the past. She wants me to prove that the fioricet does not work before realizing that she is going to have to go down the narcotic path. At least that is my great hope. I cannot take SSRIs because I am bipolar and they can trigger manic episodes. I am allergic to Imitrex and Elavil causes my heart rate to go into the 200s. Two more classes of drugs that I cannot have. I have tried DHE nasal spray and could not tolerate the extreme dizziness, nausea and sinus pressure it created. It also did not take my headache away. I have also struck out with anti-seizure medications. I am stuck in a rut and I do not know what to do. You know it's bad when even your neurologist admits that she is greatly pessimistic as to her ability to help resolve my headaches due to my drug sensitivities. It just makes me wonder what I am supposed to do. Just keel over give into insane pain levels twice a week for the rest of my life even though there is one class of drugs out there that will help me. I cannot afford to keep going back to the hospital for migraines. I need another solution. Please let me know what works for your migraine headaches so that I can see what other medications are out there. I would appreciate both medicine and non-medicine solutions that you have found helpful including but not limited to herbal supplements.

Thank you so much for the support. It helps to know that I am not alone in this constant battle. I have started sliding down the stairs on my rump after the spell that sent me tumbling down the stairs. I do not tend to suffer from falls but I have very little warning with my fainting spells. I used to have the room get dark, get dizzy, lose my hearing, feel numb and pass out (this would happen over the course of a minute or so but that was enough time to sit down). Now I can be functioning well at one moment and the next moment I am on the floor. At this point I am having a fainting spell almost every day and there is no predicting when it is going to occur. I have been secluding myself in the house because I really do now want to faint and public and embarass whoever I am with including myself. Its like I am trying to cling to my public dignity yet at the same time I cannot remain a prisoner in my mother's house (she is also disabled). I am just concerned that others will stare at me if it happens in public and I will be mortified. I guess it is something that I must get over in order to cope with this disease but it really *****.

Thanks Morgan. I will definitely start scooting down the stairs. I had not considered that. I may also have to give the walker idea a try. I am very much concerned about fainting in public. I guess i have to get over my dignity/embarassment issues and get a little more proactive.

Recently, I have been experiencing a lot more fainting spells and I am unconscious for longer periods of time according to my mom. I recently fainted at the top of the staircase and caused traumatic cubital tunnel syndrome in my left wrist. I know that I am blessed because it could have been so much worse. Lately I have not been getting auras before my fainting spells so I cannot tell when they are going to occur. Does anyone have any ideas as to how you can cushion the blow of a fainting spell short of wrapping yourself in foam. I am deeply concerned about breaking a bone or causing a worse injury.

I am 28 years old and also finished a graduate degree that I wonder if I will ever be able to use. I received my law degree from UVA while battling POTS. After e-mailing my last paper I had EMS workers at my door to take me to the hospital since my BP was only 50/45. I was hospitalized for a week and even missed my graduation. Since then I have been unable to study for the bar and unable to work. My focus and memory are awful. I was just recently awarded disability after 2 years of reapplying and waiting. The judge took one look at my medical records and said I have been disabled since I applied back in 2007. I did not even have to go through the formaility of a hearing. I feel awful about being on disability at such a young age and having to hope to recover enough for part-time work since full-time seems completely out of my league right now. I try to remain hopeful about one day working and having a "normal" life but some days it can be pretty tough.

I was initially diagnosed with dehydration due to the orthostatic hypotension. I was sent home from the ER after a bunch of saline and encouraged to drink more water since it was during the summer. After I started having full fledge fainting spells and the orthostatic symptoms during the winter the doctors started to suspect that something else was wrong. My mom did research on the internet and found information about dysautonomia and we flew out to Rochester, MN to go to Mayo and that is where I got my diagnosis.

Thanks Dr Guest. I did some research on my own to find out what vitamins, minerals and supplements were believed to enhance energy and improve memory and cognition and gradually added one supplement at a time. In terms of the mestinon I asked my cardiologist to write a prescription for it after reading about others having success with that particular medication. The mestinon reduced my orthostatic hypotension but my memory and cognition were still quite impaired. I added the supplements and also began to slowly wean myself off of several of my prescriptions. I have reduced my 26 prescription medications down to about 12 over the course of 2 months. I also started to a POTS neurologist in Glen Burnie, MD by the name of Dr. Ramesh Khurana. He suspected that my cognitive and memory deficits were due to my low BP and encouraged me to increase my mestinon to the highest level that I could tolerate. (at the time I first saw him I was on over 400mg of mestinon and suffering from frequent migraine headaches so I had backed my dosage off a bit and my blood pressure just continued to plummet.) He also started me on provigil and took me off of adderall (he wanted me off as many medications as possible that have the ability to produce anti-cholinergic effects or rapid heart rate). Initially the provigil did nothing for me I would sleep through 3 separate alarms ringing, I did not wake up no matter how loud someone was shouting, I literally had to have my mother gently shake me in order to wake me up just so that I could take my morning meds). The blend of (acetyl L-carnitine, alpha lipoic acid, co-enzyme Q10) over the course of about a week dramatically increased my memory and cognitive deficits. I did a lot of research on mult-vitamins until I found one that seemed to be just what I needed: Rainbow Light Just1Once Naturals for Women, it is now currently the #1 selling brand of multi-vitamins for women. Since starting the multi-vitamin over the course of about a week my energy levels have climbed through the roof, my nails and my hair are growing rapidly and my skin has never been smoother. I have also been working with a physical therapist who is well versed in POTS and the varying levels of exercise intolerance that we face. He helped me start a pilates exercise program to strengthen my core muscles, my thighs, and my calves. After 5 sessions of physical therapy I lost 10 more pounds and am almost back to my normal weight (massive 60 pound weight gain from a combination of prednisone and florinef over the course of 4 weeks). From a size 2 to a size 12 for those familiar with women's sizes you know this is a dramatic shift and a pretty low blow to ego and self-confidence. I have also given up coffee and I now drink green tea on a daily basis both hot and cold. I think my recovery has been due to this whole constellation of changes. Best Wishes, Adria

I completely and totally empathize with you concerns and worry. I have been unemployed for the past two years due to a severe flare up POTS that had been ongoing for about 4 years. I managed to complete my law degree and graduate but then ended up having to be hospitalized for a while. I decided to focus on getting my health in check post graduation so that I could finally be able to sit for the bar exam. I am also 27 years old and feeling the pressure of student loans and no income. I even applied to Social Security to seek Supplemental Security Income (SSI) since I do not really have much of a work history and hence have not paid into the system I just wanted to let you know that after a 4 year long and hard battle my POTS is finally stabilized. Now I am going to tell you what I am on so that others can benefit. POTS Meds Coreg 40mg Continued Release Mestinon 360mg/day (6 separate doses but will switch to the continued release version soon) Rainbow Light Just1Once Naturals Multivitamin for Women (DRAMATIC improvement in energy. I am completely and totally off of adderall and provigil at this time. Just 2 weeks ago I had to set 3 alarms to wake up and would never hear any of them. I literally had to have someone come and shake me awake. Now I naturally wake up at 7am all by myself. I have never ever in my life been a morning person until now. In addition my hair and nails are growing like crazy and my skin has never felt so amazing. Acetyl L-Carnitine, Alpha Lipoic Acid, and Coenzyme Q10: all three combined into one capsule for a great price at www.vitacost.com In fact vitacost is a great website to use for any all supplements that you take. It will save you tons of money Magnesium HCL 500mg: this has dramatically reduced the frequency of my migraine headaches. I am in the process of tapering off of my cymbalta. Yet another med to get rid of. NSI Ultra Calcium: It's a pretty large soft gel but it causes absolutely no stomach irritation whatsoever. I've been taking it for moderate Osteopenia and at my last bone density test I found out that I am borderline Osteopenia/Normal. This is a massive change. Donnatal: this medication has completely stopped all of the esophageal and stomach spasms I have been suffering from which has greatly reduced my nausea Plaquenil: it's a form of immunosuppressant that has helped me immensely in my battle with Behcet's Disease Flora Q: an OTC probiotic. Since starting it I no longer have lower abdominal pain and for the first time ever I am neither constipated nor having diarrhea (sorry that was a little graphic) I also managed to find another probiotic on vitacost that has all of the ingredients of Flora Q and at the same strengths but costs a great deal less. I cannot recall the name but I will post it later. I have also switched my inhaler from combivent to Atrovent and this has also helped to lower my heart rate. To make a long story short I am feeling absolutely amazing and taken very little prescription medication at this time. I even had to be hospitalized for a combination of the flu-strain B and Bronchitis and even then I still had the energy and stamina to do my PT exercises and some light pilates. My lungs are not quite strong enough to do cardio yet. Anyway, I have another doctor's appointment to get to. Always remember that there is always hope no matter what and feel free to send me a message or e-mail and we can chat on the phone if you you're up for it. Best Wishes for Health and Happiness, Adria

I have recently been experiencing the exact same symptoms. The GI tract is nothing but smooth muscle and the autonomic nervous system controls the muscles that help propel our food along the track. Since our autonomic nervous systems are not normal we can suffer from esophageal spasms and stomach spasms (which can make one quite nauseous). Also in general, those who have some form a dysautonomia have slower moving digestive tracts. So for example, while the average person can swallow a bite a food and have it reach their stomach in a matter of minutes. We can eat that same bite of food and it can take it up to 5 hours to reach our stomach. This is what causes the fullness sensation. You feel full because it takes our stomachs longer to pass the food along. This is also why so many POTS patients suffer from constipation. There is a medication called Donnatal and helps reduce these symptoms. Some doctors are a little concerned about prescribing this because it does carry the risk of addiction due to the ingredient phenobarbital. However, as long as you have not formed any addictions to opoid or narcotic pain medicine, do not have a strong family history of drug and/or alcohol abuse there is no need to be concerned. The difficulty swallowing that you are feeling is quite real and it is definitely not in your head

Just wanted to update my prescription and OTC meds and supplements so that it is easier to see and understand. Best Wishes for Health and Happiness, Adria

Hello Everyone, I just wanted to let you know that after a 4 year long and hard battle my POTS is finally stabilized. Now I am going to tell you what I am on so that others can benefit. POTS Meds Coreg 40mg Continued Release Mestinon 360mg/day (6 separate doses but will switch to the continued release version soon) Rainbow Light Just1Once Naturals Multivitamin for Women (DRAMATIC improvement in energy. I am completely and totally off of adderall and provigil at this time. Just 2 weeks ago I had to set 3 alarms to wake up and would never hear any of them. I literally had to have someone come and shake me awake. Now I naturally wake up at 7am all by myself. I have never ever in my life been a morning person until now. In addition my hair and nails are growing like crazy and my skin has never felt so amazing. Acetyl L-Carnitine, Alpha Lipoic Acid, and Coenzyme Q10: all three combined into one capsule for a great price at www.vitacost.com In fact vitacost is a great website to use for any all supplements that you take. It will save you tons of money Magnesium HCL 500mg: this has dramatically reduced the frequency of my migraine headaches. I am in the process of tapering off of my cymbalta. Yet another med to get rid of. NSI Ultra Calcium: It's a pretty large soft gel but it causes absolutely no stomach irritation whatsoever. I've been taking it for moderate Osteopenia and at my last bone density test I found out that I am borderline Osteopenia/Normal. This is a massive change. Donnatal: this medication has completely stopped all of the esophageal and stomach spasms I have been suffering from which has greatly reduced my nausea Plaquenil: it's a form of immunosuppressant that has helped me immensely in my battle with Behcet's Disease Flora Q: an OTC probiotic. Since starting it I no longer have lower abdominal pain and for the first time ever I am neither constipated nor having diarrhea (sorry that was a little graphic) I also managed to find another probiotic on vitacost that has all of the ingredients of Flora Q and at the same strengths but costs a great deal less. I cannot recall the name but I will post it later. I have also switched my inhaler from combivent to Atrovent and this has also helped to lower my heart rate. To make a long story short I am feeling absolutely amazing and taken very little prescription medication at this time. I even had to be hospitalized for a combination of the flu-strain B and Bronchitis and even then I still had the energy and stamina to do my PT exercises and some light pilates. My lungs are not quite strong enough to do cardio yet. Anyway, I have another doctor's appointment to get to but I wanted to share some of the things that have helped me with memory and cognitive issues. I hope this helps.

Hello Everyone, While I was in the Criticial Care Unit due to severe dehydration stemming from a C.diff. infection, I had to get a PICC line due to the fact that I have such tiny veins and the dehydration made them for the most part non-existent. After the PICC line was placed I started experiencing arrythmias and they continued throughout the duration of my stay in the hospital. I experienced several runs of Ventricular Tachycardia in addition to both PACs and PVCs. Over the years I have had several event monitors and holter monitor studies done and I have never experienced any arrythmias. I have always had a perfect sinus tachycardia. EP docs have always informed me that my heart has a normal sinus rhythm it's just way too fast (without meds my HR easily reaches 200+ beats per minute upon standing). The ventricular tachycardia was extremely painful and honestly made me feel as though I was about to experience a heart attack. The runs of PACs and PVCs also caused pain and dizziness. I experienced all of the arrythmias whily simply lying down in my hospital bed with my head slightly elevated. After my PICC line was removed on monday, the arrythmias that I was experiencing finally ceased. Thus far I have not experienced any of the painful arrythimias that I was plagued with on a daily basis while in the hospital. I am wondering whether the PICC line caused me to experience arrythmias or is this some sort of indication that my POTS is worsening or that a new cardiac problem is about to emerge? Has anyone else had a similar experience?

My mother has very little tolerance, patience, and understanding when it comes to the limitations that POTS places upon my life. My mother suffers from hydrocephalous (excess fluid on the brain) which results in daily migraine headaches. Also, about 2 years ago when the surgeons were removing her lumbar shunt from her back they caused nerve damage in her leg resulting in RSD. She has to use a walker to get around and she is on a 100mg transdermal Fentanyl patch to control her pain. In spite of her disabilities, my mom is still able to perform household chores such as laundry, washing dishes, taking out the trash, climbing up and down the stairs 20+ a day, etc. She feels that I am fully capable of being just as active as her and that I am simply choosing to be lazy and weak. My mother is unable to drive due to the fact that she is on such heavy duty pain medication and she becomes absolutely irate when I am too ill from POTS to drive her where she wants to go and perform her errands when she wants them done. I am currently suffering from a C.diff. infection and I have had blood diarrhea for the past 3 weeks in addition to fever/chills, 30 pound weight loss over the course of 5 days, and out of control POTS symptoms. Sitting down my BP is 160/93 and my pulse is 130 and standing up my BP is 70/40 and my pulse is 180. In spite of all of my current disabling symptoms, my mother still demanded that I drive her to CVS so that she could pick up a prescription. When I told her that I was too unstable to perform this task, yet another argument ensued. She accused me of being completely obsessed with my illness and selfish. She actually had the audacity to say such condescending/mean spirited things as: you are not the first person to run a fever and that in comparison to her ailments I am really not that bad off. She feels that I am choosing to be weak and that she does not have that luxury. I cannot believe that she is still clinging to the false belief that my illness is nothing compared to hers even after I was hospitalized in the critical care unit for 7 days in a row due to the severe dehydration resulting from a combination of POTS and the bloody stools associated with C.diff. It is so hard to live with someone who exhibits such a profound lack of support and compassion with respect to the challenges I struggle with on a daily basis due to the disabling effects of POTS.

Hello Everyone, Thank you so much for all of your advice and well wishes. I decided to contact the GI doctor that saw me during my stay in the hospital since the bloody diarrhea is back up to 5 times a day and the fever has once again returned. He seems to think it may be c. diff. even though the stool cultures that were performed at the hospital came back negative. Apparently, the presence of flagyl and iv antibiotics in your system can cause you to test false negative. I was diagnosed with C. diff. for the first time when I was 16 years old. I went on a family vacation to Cancun, Mexico. I was on prednisone at the time for the treatment of Behcet's Disease, an auto-immune condition that is similar to lupus. We did not drink the water but we did get ice in our sodas. When I returned home I started having bloody stools and lower left sided abdominal pain. My GI doc did a stool culture and it came back positive for Clostridium difficile. I was treated with vancomycin at the time due to the fact that I absolutely could not tolerate flagyl. It did not matter whether I took it with or without food it simply refused to stay down. I tested positive for C. diff. again in college when I was about 19 with similar symptoms. The GI doc said that once you get a C.diff. infection even though the vancomycin kills off the overgrowth of the bad bacteria the spores can still remain in your colon indefinitely. Taking broad spectrum antibiotics can cause the spores to take off and trigger yet another infection. Also, every successive infection of C.diff. tends to be more aggressive than the one that came before it. I had no idea that C.diff. could cause fever, bloody diarrhea for 3 + weeks, 30 pound weight loss in less than a week, abdominal pain, and severe nausea. No one ever informed me that this bacterial infection would be a recurrent thing or that it had the potential to be so destructive. Looks like yet another diagnosis to add to list Unfortunately, due to all the nausea, vomiting and bloody diarrhea I am confined to the BRAT diet (bananas, rice, applesauce, toast) for Thanksigiving So incredibly unfair. Why couldn't this have happened at a time when I am not surrounded by so much amazingly delicious looking and smelling food??? My GI doc also wants me to come in for a colonoscopy on Monday afternoon. He wants to check me for ulcerative colitis since the symptoms are incredibly similar to those of clostridium difficile and I am at risk of developing it due to the fact that I have Behcet's Disease. So I will be starting the lovely ginger lemon flavor phospha soda prep on sunday. I am really not looking forward to this considering that I am all ready rapidly dehydrating. Sitting down my HR is 130 and standing up it's 180. My cardiologist's partner, who incidentally knows very little about POTS, informed me that as long as I stay under 200 beats per minute that I do not need to be concerned about a cardiovascular event. I tried to explain to her that I was not concerned about suffering from a CVE I just want to be able to breathe when I stand up. I don't think that's asking too much (sorry, venting). She just told me that my heart rate was most likely elevated due to my recent illness and that I should just try to take it easy. Sometimes I really wish that I could just give her a tiny sample of what it actually feels like to try to stand up and otherwise function with a heart that is doing its own personal aerobics routine. The experience is many things but "easy" is not one of them. Have a Happy Thanksgiving and eat a little extra for me