juliegee

I get this, too. I've had it since my late 20's when migraines were a big deal for me. I've had all the standard work-ups, MRI's, etc. My neuro was never very concerned. It does go away. For me it's always my left side. In retrospect, I probably had POTS then, too- but didn't know. I don't know what it is. Because I'm in my mid 40's now, I run through stroke symptoms when it happens & as long as I'm still smiling on both sides, I don't worry about it:-) I'd be curious to hear of others' experiences. Julie ]

Hi Carolyn, My 14 y/o son also has orthostatic intolerance (OI) and has been taking florinef for about 2 years. You don't mention which type of OI your son has, but it sounds like POTS given the information you have shared. My son has Neurally Mediated Hypotension (NMH.) His BP used to drop to almost nothing several times a day. Both POTS and NMH are treated similiarly and florinef has been a miracle for Mack. Mack's doctor (Dr. Peter Rowe from Johns Hopkins) had him try increasing fluid and adding salt to his diet, first. Both helped, but not enough. He started with a half a florinef, .05mg, and worked his way up to .2mg. Dr. Rowe increased his dosage by 1/2 tablet a week until he reached a therapeutic dosage. .2mg is the maximum Dr. Rowe recommends for children. We were told to look out for a horrible headache as that may be a sign that the dosage is too high. Mack never got a headache from the florinef. All the while we were upping the florinef, we were also increasing the salt in his diet. You are right that florinef increases blood volume, but ONLY if you also increase the salt and fluid while taking the florinef. Mack took 2 Thermotabs (salt tablets) that are sold OTC after each meal. His ped regularly checked his electrolytes while we were determining a therapeutic florinef dosage for Mack. Florinef can cause some to lose potassium. Mack's bloodwork never showed a deficiency, but his ped had him take a daily supplement to keep his electrolytes balanced. Mack also drank MANY 20 oz bottles of water a day. Florinef can cause a bit of an increase in appetite. We saw that as a plus as my son has always been a bit underweight due in large part of GI motility problems caused by the OI. I know that florinef has steroidal properties, but none of the negative side effects associated with more traditional steroids. Florinef helped Mack to effectively increase his blood volume and stopped his daily episodes of presyncope. I did take Mack's BP weekly. After a year and a half of this treatment, his BP began to creep up to 140/90. With Dr. Rowe's help, we slowly titrated him down to .05mg (a half tablet) daily with only one Thermotab. Mack still drinks tons of fluid. His BP is great again 110/75. Occasionally, he experiences lightheadedness- during stress and schedule changes (i.e. traveling.) We've found that raising his florinef temproarily during these times is really helpful. Of course, I have to keep an eye on BP during these periods. Mack is learning what his body needs. He is learning to check his own BP and knows when to increase salt and fluid based on his symptoms. I'm sorry that your son has to deal with this, but I wouldn't be afraid to cautiously begin adding florinef as part of his protocol. The help of an experienced and educated doctor (especially while finfing a therapeutic dose) is invaluable. Please feel free to PM me if you have any questions. All the best- Julie

Huge Kudo and thanks to you, doctorguest!!! Your expertise, generosity, and kindness make you a role model for all docs. I can only hope that future sufferers will experience the compassion and care that they deserve. We are so fortunate to have you advocating for us. Julie

Hi Linda, Shocking after so many years! You seem to be proceeding slowly and cautiously...which is wise. Of those I've know with chiari issues, none has been "cured" after surgery. Some have even worsened. Make sure you are dealing with VERY experienced neurosurgeons, who regularly deal with chiari problems. Keep us posted on what you learn. Julie

Oh Angela- When I was much younger, I had to deal with the same thing- dozens of comments a day. I was sooo tired of it (and so immature) that I sometimes blurted out "Really? must be the chemo..." I loved seeing the horrified look on the busybodys' faces. I'm not recommending my tactic, but it certainly shut perfect strangers up. Now, at 45 y/o, I'm, 130lbs. at 5'9" and feel downright "chubby." But, I'm so confident in myself that others comments just blow around me. Rather than defining me, their comments tell me who they are. It's all in you, sweetie. You are not WHO others perceive you to be. You are perfect just as you are. You are not defective in any way. I think you're incredibly strong and brave to work as hard as you do with such severe symptoms. You deal beautifully in the midst of amazing adversity. YOU are a role model to anyone. Hold your head high. Julie

I checked weight loss as that's a big probelem for me when my POTS symptoms flare. However, when things are under good control, I actually have to be conscious of my diet and exercise as I'm 45 and my metabolism is slowing down:-) Those who are my age know exactly what I mean! That being said, when my symptoms flare, I can lose 20lbs (that I don't need to) in a month. Interestting survey! Julie

Anjuu- Sounds a bit like anaphalaxysis. Any rashes or flushing at the time? Sometimes, my rashes all connect and I just look tan with redder lips. I am being treated for MCAD Mast Cell Activation Disorder and I have experienced anaphalaxysis w/o a known trigger- stress or just being overly tired. Any history of allergy problems, hives or other strange skin symptoms? Just a guess. Definately talk with your doc. Julie

I wonder the same thing. Last might my BP was 75/45. I felt really dizzy and couldn't get a good breath. I was so happy to fall asleep. My HR, however, doesn't go that low when my BP does. It stays in the 60's. The combo of a low HR and low BP.....you should, at the least, call your PCP and follow advice. My son's HR has gotten to the high 30's. I've rushed him to the ER, where they weren't impressed as he was feeling OK. However, I don't think his BP was really low. A cardiologist did a work-up and they said to bring him back if he's ever showing symptoms. Let us know what your doc says. Julie

Hi Rachel, Wow, finding 4 great docs in GA who all "get it." Unbelievable! I may send you a PM for referrals. Unfortunately, I haven't been to the other docs you mentioned, but I leave Vanderbilt as my last resort option if things really flare again. I understand where you are and definately think you should follow up with both Vanderbilt and Dr. Grubb. You aren't getting better and you are too young to be so severely disabled. I hope you get some good concrete info to help you make up your mind. Keep us posted on what you decide. Julie

Rest and heal, Nina. I'm so glad you're on the backside of the surgery & on the road to recovery. Hugs- Julie

Oh Donna- I'm so sorry that things are so rough right now. YOU must make your health a priority. If there is a chance you are obstructed, etc; new X-rays need to be taken. Old ones will not show what your tum is doing now. If things worsen, head to the ER. They MUST help you, if only for liability reasons. I agree with Melissa. There is a GI doc out there who can ensure that you're not in immediate danger and who can take steps to help you be more comfortable. You have to find the strength to make more phone calls and advocate for yourself and find that doc. Or....when my son and I were really ill, our insurance company called with a "health advocate" who offered to help us. You could sure benefit from someone like that. I wonder if you could request an advocate from your insurance co. who could help find a GI doc for you? Please know that you are in my thoughts and prayers, Donna. I am praying that your health, relationships and spirit will heal. You are so important to your kids. Hang in there and keep us posted on your progress. Hugs- Julie

Dad of POTS son- National concrete canoe competition? Sounds like a losing proposition:-) Glad he's well enough to try! Mom of NMH son

Ditto to what Flop and Nina said. You need further testing, Donna. Get your Mom or a friend to advocate for you in finding someone while you are feeling so weak. Also, be checking for abdominal sounds. You should be hearing something down there, if you don't, it could point to an obstruction. If you have ANY symptoms of an obstruction, get to the ER. They'll find a GI for you. Prayers and hugs- Julie

Oh dear, Linda Joy- I'm so sorry to hear about what happened. How frightening and painful- I'm sure. And, what a disapointment after looking for answers. I regularly take zofran for nausea. I have had NO side effects. I did read that heart rythym disturbances were a possible side effect. That made me understanbly nervous with POTS and instances of uncontrolled tachy. So I waited for weeks before I took my first one. It was barf or swallow the pill:-) It definately helped me and has no negative side effects. I notice that it's best to take it when my nause is fairly mild. If I wait till it's full-blown, the zofran has less effect. Did you start the oxycontin at the same time? Could that be causing the shakiness? All the best- Julie

Ditto- Doctorguest's guess. I've had costochondritis in my late 20's. It hurts like the dickens. It's viral in nature- I think (?) and it eventually went away after a few weeks. A heating pad helped me. Chest pain is really frightening and I was relieved to get my DX. Hope you feel better soon. Julie

Oh Flop, I feel for you. How frustrating to not be able to get a referral! Can you switch GP's to one more open to your plight and possible solutions? How's the ranitidine going? Like you, I just buy it over the counter- since it's been available that way my insurance co. will no longer pay for it. My allergist says that it is a type of antihistamine, an H-2 blocker, that controls stomach acid. I was actually taking it for GERD before I found out that it was also helping to stabilize my mast cells. I take 300mg daily, 150mg in the AM and 150mg in the PM. This dosage pattern seems to best help with the GERD and hives. Tell us if it's making a difference for you. Julie

Got it. THANK YOU, NOLIE!!!! Julie

I definately fall into the abnormal category!!! I am officially allergic to nothing per skin testing. However, I get idiopathic hives frequently- to the point of anaphylaxisis several times. Pistachios, skin pricks from holly, sulfa drugs, various antibiotics, and stress (can you imagine?) are known triggers for me. I am currently being treated for mast cell activation disorder. Since starting treatment, my chronic nausea, headaches, fatigue, HR and BP variability are much better. My BP is still too low and I'm frequently lightheaded, but overall much improved. Julie

Hi All, Does anyone have Dr. Peter Rowe's E-Mail? I know a few of you had been treated by him or had kids treated by him. My son is still Dr. Rowe's patient, but I lost his E-Mail when my @#$%* computer crashed. I really appreciate the help. You can PM me with the info. THANKS! Julie

Hi Flop- Mixing antihistamines is a necessity for many. My allergist (previously from Mayo) insists that the combo of H-1 and H-2 blockers can best stabilize mast cells. I take ranitidine, singulair, zyrtec, and benadryl daily. This controls not only my hives, but also helps to stabilize my BP and HR- definately improves my POTS. This combo also controls my daily nausea and headaches. Definately seek the advice of an allergist! Like you, everything is worse for me when the pollen count is high (despite the fact that I'm officially alllergic to nothing:-) And, I do take low doses of all of my meds. It is the COMBO that really helps. All the best- Julie

We pay $20 to see Dr. Rowe- thanks to UHC. And, he's been treating my son long distance for years without charging us a dime- despite my encouragement to charge us for phone visits, etc. (We do bring nice gifts when we visit to show our gratitude.) He's definately a top CFS doc & a very kind and caring man. His advice and advocacy has been invaluable and has brought my son back from being unable to leave home to attending the 8th grade full-time. There are wonderful docs out there who really want to help. I'm glad the article in First is shining attention on NMH. We need a POTS article next! Julie

Patti- How exciting! I will look for the mag & book. My son has NMH and is treated by Dr. Rowe. I am convinced that this disorder is underdiagnosed & could definately benefit from better dissemination of info to physicians and the public at large. A "First" step! Julie

Brain Fog: MCAD= Mast Cell Activation Disorder! Duh- Julie

I agree with Flop. Despite the fact that I apparently am officially allergic to "nothing" per testing, my POTS is much worse when pollen is really high here in the Southeastern US. We reached all time record highs this spring in the 6000s. (Pollen counts in the 100s are considered very high.) I a currently being treated for Mast Cell Activation Disorder MASD and that has improved my POTS, chronic nausea, headaches and fatigue. For many of us, there certainly appears to be a link between allergies (or misbehaving mast cells) and POTS. Zyrtec, Singulair, Benadryl and Ranitidine are very helpful for me. Julie

Angela, Once I began my regimen for MCAD: ranitidine, zyrtec, singulair, and benadryl- I was able to stop taking my before meal prokinetic (eyrthromycin, in my case.) I still occasionally get nauseous, but nothing like before. Definately try an H-1 and H-2 blocker before looking into the gastric pacer. If your skin biopsy comes out OK, you don't have mastocytosis; but may have mast cell activation disorder (much more common) and it has the exact same symptoms, but usually a better prognosis than adult onset masto. Untreated, you're basically in a constant state of pre-anyphalaxsis. Thus, the nausea, low BP, high HR, etc. I hope you get relief soon. Julie