juliegee

What other drugs are you taking?

Hi Karen, Could he have been referring to a mitochondrial disorder. There are many different varieties of "mito" disorders and diseases. I know that POTS is a complication of some. Mitochondria work in our cells as a metabolic process... Definately, ask the doc for more information! All the best- Julir

Dayna & Cardiactec- After just one pill? Or several? Did the "D" happen right away? Being a busy Mom (with a traveling husband), I'm afraid to try this! Julie

Hi Jenny, I definately believe that there is a genetic component to POTS and OI's. I have it as does my son. So do my mother and grandmother. Look carefully at your family history. Does anyone have a tendency to faint or have tachycardia? Or just seem plain tuckered out all of the time? Since yours came on following anesthesia, perhaps it doesn't have a genetic component and will pass. My came on following a car accident. It has waxed and waned over the years. It is not too bothersome now. There is definately hope. Julie

Hi Guys, I've been suffering from severe constipation since June. I drink tons of water, eat loads of fiber and exercise a lot. Even Miralax isn't helping the way it should. My GI doc has prescribed Zelnorm. I'm a bit nervous to take it as I've read that it can exacerbate othostatic hypotension. Is anyone currently taking it? Has anyone had any problems with it? Thanks in advance for your help. Julie

Sue, I'm sorry that you're backsliding. This may not be "news" to you, but it really sounds like you've got the symptoms of Chronic Fatigue Syndrome. It's relatively common with POTS. What meds are you currently taking? My son has CFS, POTS and NMH and went from being housebound to functioning pretty well. He's actually attending school this year! There is definately hope. Do you have a good doc, who is working to tweak your regimen? Keep your chin up. I'm sending positive energy your way. Hugs- Julie

My son has POTS and NMH(neurally mediated hypotension). Many do. Sounds like you may, too. his is controlled really well with drug therapy. I hope yours can be, too. All the best- Julie

As the Mom of a of child with an autonomic dysfunction, I know how hard your Mom must have fought for you. And then after getting a diagnosis, she struggled with letting you be normal and "overdoing" for you. It's impossible to always get it right. No one truly understands what it's like to walk in your shoes. Regardless, you are a sweet daughter and incredibly noble to print this retraction. Your Mom would be proud of you. And, so am I! As far as things getting worse, you need to look at your treatment program. (I hope you are on one.) My son's has to be frequently tweaked depending on the symptoms du jour. Best of luck to you. Hugs- Julie

Hi Jess, Yes, I've been evaluated for sclerodrma numerous times. I also have severe Reynaud's and problems with my esophagus. Usually bloodwork is the first step. If your ANA's are high, your rheum will probably do more checking. Google CREST syndrome. It's much more likely (hopefully) that that's what's going on. I have many signs of scleroderma, but my ANA's have never been high. Thank God. Scleroderma can be a scary disease. Please keep us posted on your status. Julie

Hi Radha, Lexapro has been a godsend for my son. He started on 10mg, which took care of the anxiety and helped balance his autonomic nervous system. At that dose, it helped him to able to eat (he has motility issues) but didn't necessarily increase his appetite. He has upped his dose to 15mg per Dr. Rowe's instructions to help with energy. (He also has CFS.) It has, but at 15mg, it has also increased his appetite BIG TIME. I would guess that 10mg might do the trick for you w/o the pesky side effect of munchies. Best of Luck to you. Julie

Sophia- I hope I'm not too late replying to this.... I was also told that I needed to have a hysterectomy. I had a huge fibroid- 10cm (or maybe several smaller tumors stuck together). They were causing bulk symptoms. I was having trouble urinating and having BM's. I also bled a ton nonstop. Instead, I had a relatively new procedure, that was much less invasive- but took care of the problem. An interventional radiologist embolized the arteries feeding the tumors. They have shrunk by more than half and my periods are much lighter. He basically cut-off the blood supply to the tumors. Many people feel much better after a hysterectomy, but not everyone. This is major surgery, esp. for someone with POTS. In my research, I encountered many women who took years to recover. And a percentage, who no longer enjoyed sex following the sutgery. All stuff to consider. Best of luck to you. If you want more information regarding the embolization, send me an E-Mail. Hugs- Julie

Hi There- Try not to worry to much- easier said than done. I'm pretty sure you can't have an MRI. Many of us here have small masses in our brains that are harmless, pineal cysts. I would get to a neurologist- pronto. I pray your mass is nothing serious and NOT the cause of your chronic headaches. I'll keep you in my thoughts and prayers. Julie

Hi There- I'm so glad that florinef seems to be working for you. You are very smart to start slowly. My son started the same way. he began with 1/4 of a .1mg tablet and waited a week, then 1/2 of a .1mg tablet and waited a week, etc...until he worked up to a therapeutic dosage of .2mg daily. Florinef has been a miracle for him. He also takes 6 Thermotabs and 15mg of Lexapro. This combo for his OI has him feeling almost normal. I pray that florinef will be your miracle. Keep us posted on your progress. Julie

It sounds like you've had a reaction to more than one drug. Which one specifically is giving you a problem? I know many with dysautonomia have to start with micro-doses and wait a week or so before upping the dose to a more therapeutic level. for instance when my son started florinef, he started with 1/4 of a .1 tablet. Ten days later, he moved up to 1/2 of a .1 tablet. He eventually worked his way up to .2mg or 2 full tablets a day. Going slowly gave his body a chance to adjust and respond to the medication. All my best- Julie

Hi John- I a relative newbie, but I've followed Linda's saga. Have you suggested or asked the doc's to look into mastocytosis? It seems to connect the dots and explain all symptoms. Best of luck. God Bless- Julie

I just recently learned that combining Toprol with Lexapro can cause grand mal seizures. Please be careful not to mix the two! Julie

When my autonomic problems are full-blown, I also have trouble swallowing. At times, I almost feel as though my throat is closing. (it isn't!) I've also had esophogeal spasms. This symptom has totally gone away for now- it's been years. Whenever I begin to feel it returning, it prods me to s-l-o-w down and take care of myself. Relaxing (believe it or not) seems to help. I chalk it up to the whole autonomic thing. For me, it's just a nuisance. I pray the same for you. Julie

I can't specifically say "what" in the flu shot gave him concern. He did say that if you've had a flu shot, since being DXed w/ an OI (POTS, NMH) and you didn't have a negative reaction- you'd probably be OK. Otherwise, he seemed to advise caution. Julie

I think Nina mentioned mastocytosis as a possibility. Linda Joy sure seems to have many of the symptoms. I hope her doctors are looking into that. She is in my prayers. Julie

Hi Lori, Maybe your vomiting/nausea is a symptom of your POTS esp. as it seems to occur when your HR is so high. But, one other thought is that maybe you have a motility problem. Unfortunately, they are relatively common with autonomic issues. The first test that your GI can do is a gastric emptying study. Try to do a 4 hour test- they are a bit more reliable. If that comes back normal, you may want to look into motility studies. Best of luck. Julie

My son is treated by Dr. Rowe at Hopkins for his dysautonmia. At Mack's last appt., I asked Dr. Rowe his opinion on flu shots for patients with orthostatic intolerances. He was hesitant to recommend a flu shot. He said to proceed with caution. Flu shots have worsened many of his patients. He seemed to indicate that Mack was safer taking his chances. Julie

Hi there- Wow! Have they told you that you need brain surgery? I'm the other member with a pineal cyst... I posted about it a while back. My neurologist said that mine didn't bear any relationship to my headaches, numbness, autonomic issues, etc. Are you sure that yours accounts for your symptoms? Pineal cysts are often incidental findings on MRI's. Yours would have to be blocking your cervical/spinal fluid from circulating or otherwise bulking into other territory to need surgery. If this does account for yor symptoms- how cool to have a solution. But, I understand the pineal cyst is in the center of the brain and hard to get to. Please consider surgery as a last resort and get several opinions before you proceed. Most importantly, keep us updated. I'm sending prayers and positive thoughts your way. Julie

I get that chest tightening, too. Singulair totally relieves it. Julie

Hi- I've also got a pineal cyst. It was found during an MRI of my brain. I think it's big enough to almost be blocking my cerobrospinal fluid from circulating freely. It really freaked me out at first. I had follow-up MRI's every 6 months for a while. But, it never grew. I saw a specialist at Emory in Atlanta who speculated that it might give me problems when I was a little old lady. (I was in my early 30's at the time.) He told me to frequently roll my eyes back in my head . As long as I was able, the cyst wasn't growing. I've been following his advice. i haven't done any further MRI's. I think pineal cysts are relatively commonly and extraneous findings on MRI's. Definately, follow your doctor's advice and look into it. Hopefully, it'll just be one of those weird thing you get to live with... All the best- Julie

When I first did my poor man's tilt table test, my son took my pulse every few minutes. After about 4 minutes of standing, my son was unable to get a pulse in either wrist, or ankle. He had to resort to the artery in my neck. I think that's a symptoms of POTS. Julie