aunie

I had a complete hysterectomy on April 30th of this year, due to pelvic congestion and many other nasty symptoms. We decided to take both my ovaries because both ovarian veins were dilated very large, even after embolization. I also felt like I was on a roller coaster every month with the hormonal ups and downs, and it was causing the POTS to go up and down too. I did pretty good until day 4 post op and then I got a huge wave of anxiety, insomnia, almost manic type episodes, along with joint pain and hot flashes. I am so sensitive I think to any changes in my body, so even just after few days I was really feeling mental, even suicidal. I had to keep telling myself that it was just the hormones, I am only 29. I called the doc and he put me on an Estropipate .75mg right away and then a few days later I felt more stable. Physically I am a little better. Prior to surgery I would actually tilt the foot of my bed up, because I was starting to have dizzy spells in bed. I don't have to do that anymore. I breathe better, I have more energy, and I feel stronger. I believe it was a good choice for me. Although recently I have been having horrible spells of adrenaline. I suspect it has something to do with the estrogen and lack of progesterone. I haven't ever had an adrenaline surge like this. I feel like it's been gradually worsening over 3-4 weeks. It is so bad now that I wake up with acid up my nose, I have constant nausea, I want to eat constantly even though I am sick to my stomach, anxiety is out of control, insomnia is back and I feel absolutely horrible. I am getting so stressed over teeny tiny things. I know estrogen and progesterone all affect adrenal hormones too, that's why I am pretty sure that this is all caused by some sort of imbalance.

I think all in all, we react differently, just do your best to make an educated decision for yourself, one your confident in. Even though I am having a hard time right now with the hormones and I feel absolutely miserable and on the verge of being a crazy person, I truly believe I made the right decision. One step at a time I will face each symptom and hopefully gradually get myself feeling better. I am still bedbound, but I have made progress, I hope that one day soon I can start getting back up again

-Andrea

I used to get vertigo alot. Now only every once in awhile. I had a tube placed in my left ear and it has helped tremendously! I have had it for two years and it needed replaced last year, during the time it needed replaced, I noticed my symptoms coming back and getting worse, New tube and symptoms went away again.

Banana's- Embolization worked for about four months. My body just decided to make the veins larger, and the blood re-routed to other varicose veins in my pelvic area. So I got more pain in different areas. It got so bad before I had my hyster that I was literally tipping the bed at the foot to try and get the blood to drain back to my heart. I was having dizzy spells in bed, it was awful. My gyno said that during the surgery there was alot of extra blood. It's called collatarel blood flow/vessels. Don't know how they got there, but it was pretty bad. I think embolization is worth trying. You don't really know what your situation looks like until they open you up to see. MRI's and venograms showed Pelvic Congestion, but it didn't look near as bad as it was. My gyno said it was like nothing he'd ever seen. It may work for you better than me. The hyster improved blood flow, because my uterus isn't hoarding it anymore! I still have pain though, and still ache. That's why I am going to see the vascular surgeon. Hoping he can do something about the veins the gyno couldn't reach. Feel free to msg me if you wanna chat!

You are not the only one dealing with being bedridden, that's for sure. I passed out in February 2011 and ever since then I have steadily declined. Currently I am pretty bedridden. I do get up to use the bathroom and shower in a chair. I do from time to time try to get up and grab a quick bite to eat when no one is home ( I mean real quick ), but for the most part I am in bed. I don't even sit up much either. I have Pelvic Congestion and it greatly contributes to the pooling, but I recently had a hysterectomy and it has improved my blood flow. I use to get dizzy even in bed while lying flat, now it's just when I stand or if I sit up for more than five minutes. I am also trying to get out of bed more, but it's been slow progress. My nervous system is so sensitive, I get over stimulated very easy. I get really tired too. I also vibrate internally, doesn't always show externally and my head gets super dizzy and foggy. I also have tachycardia and palpitations. My problem is if I over exert myself in the smallest way, I could be dealing with hours of severe palpitations and adrenaline surges. It's awful! I have had POTS for almost six years and these last two have been the worst, Right now I am doing toe point and flexes in bed for legs, also leg lifts on my side. I lift small 2-5lb pound weights in my arms. I try to stretch every muscle out and move positions almost every 30 minutes or sooner. When I first started I could only do 5 toe point and flexes without causing symptoms to flare. Now I am up to 30. Same with the other exercises, started slow, but am gradually improving. I started this about 10 weeks ago. It feels like I am crawling, but I really want to get out of bed some day, so I have to keep pushing it. My immune system has trouble, I have allergies and I pick up every virus my kids bring home. So it seems like every two weeks I am down with something and this really makes things go slow. My advice is do what you can and start slow, at least your doing something. So when the day comes you can get up, you will be strong enough to do it! I am soooo done being in bed, these symptoms are not gonna hold me back anymore. If I feel crappy along the way, well, Oh well. I would have felt crappy even if I wasn't doing it On a quick note, I am on some meds, zoloft, zyrtec, estropipate, ativan, xanax. Unfotunately I could not tolerate florinef, midodrine, or a beta blocker, made me way sicker. Best wishes and Good Luck!

-Andrea

I have this too. I find that it seem's harmless as well, just annoying and it was way scary when if first started happening. I also think it's some weird dysautonomia thing.

Thanks so much for this post! I totally needed to hear this. I have really done down hill this year, to the point where I am in bed all the time and even sitting up is not going so well. I feel trapped in this little box and I really need to try to see past it. What yu talked about really helped me put my own thoughts into perspective. I have really bad food/drug and chemical sensitivities too and I have been making an effort to try things anyway, even if it's scary. I try to stay calm and try not to anticipate the reactions. This is helping me also with adrenaline surges and backlash.

It was a great reminder that we are always capable of being in control, even if our bodies don't always think we are

Great everyone! Hopefully one of these will work.

Thank you both! At least I know where to look now.

I know a lot of you have played the supplement game and I have been reading some of the threads out there, but my question is, Which brand of vitamins is best? Here is my prob, I am allergic to so many things and do not tolerate preservatives or dyes. I am only eating like five or six different foods and I really need a multi-vitmain, but I am really scared to try any. I am also having a hard time finding a good quality allergen free vitamin. I was hoping you guys could give me some recommendations. I would like at least to try the allergen free ones and see if there is one I can possibly tolerate, I really need it. My immune system has seen better days and I am on a mission to get it up and going So any tidbit would help. I am having issues with wheat, corn, dairy, soy and all the other ones.

Issie,

Thanks so much for sharing. I am terrified. I am afraid that lack of hormones is going to make me crazy. I already struggle with anxiety and bouts of the blues. but I think it's partly my hormones causing those flares. Of course the adrenaline issues too. I'm just afraid I'm going to make myself worse and it's not like I can put it back in once it's out., I just don't know if it will be worse or better without my ovaries. Are there alot of different hrt options? How bad was the pain? I am worried about the pain too, because of my allergy to pain medicine. I'm just going to keep praying and hope god will show me the way, because it is all very scary to me. I use to be stronger about having surgery and stuff, but years of tests and surgeries has wore me out. At least I know other potsies have gotten through it and survived. I also am very lucky to have the two children I already have, so it is alot easier for me to let it go, at least in that way. Thanks again!

I am in the same boat right now. I have pelvic congestion and had them treated with vein embolization. They put metal coils inside my ovarian veins to block out the blood flow. It worked well at first and got rid of my pelvic pain and back pain, but I am going on 9 months post op and right this very minute I am experiencing pelvic pain again. It has been so bad that the last few days I haven't been able to sit up much. The blood just pools in my abd/pelvis and it feels like a ball, I can also feel the blood in my vaginal area too. They told me this may happen. That every person is different and they can't really tell you how long it will work. The next step is a hysterectomy.

I am actually kind of scared because I am pretty sure I have MCAD/MCAS. I am working on seeing a doc, but I won't get to see him or get treatment for another 4-6 months. In the mean time I am hoping this is just a bad week for my pelvis and it will get better. If not I am looking at a hyster and that totally freaks me out. I am allergic to soo many meds. I can't take any pain meds that I know of, and of course am allergic to anti-biotics and such. Recovery time for something like that is very long and without pain medication I don't think I could handle it. Not to mention if they have to do a total hyster, I am probably allergic to hormone replacement too. It's all very scary. Although eventually I will have to do something about my uterus, because of all the varicose veins and the pooling, I can't really do much but lie down in bed. Sitting up is getting harder. Before I had embolization I had this same problem. I really hope that this isn't the first sign that it's coming back.

-Andrea

My doctor let's me do them as needed. I don't do them on a regular schedule but I can have them whenever I am not feeling well. We set them up through a home health agency and a local pharmacy. The pharmacy brings me the fluid and all the supplies and I just keep them here at home. Then I call the agency when I need some and they come start an IV and start the first bag. I hook up the second or however many we are doing and then when I am done I flush it. If I am feeling super sick and I think I may need more in the next few days I leave the IV in and just flush it morning and night to keep the line clear. If the IV is going bad or hurting a lot, I pull it. I worked in a hospital for eight years so I know the proper way to do these things, but your nurse can teach you and after time you can do them on your own as well. The problem with having fluids is that your veins get abused. I have scar tissue in a few of my veins in my left arm and it makes it really painful. I don't have alot of good veins either. A picc or a cath line is too big of a source of infection for me. I'm allergic to most anti-biotics so getting an infection would be really bad. I actually had two IV's put in this last week for fluids and I have four different sites where they tried to get a line and failed. It's a pain over time, the wear and tear on your veins from all the IV's, but it does make you feel better for awhile. I am allergic to most meds, so I don't take any POTS meds, so this is all I have for treatment. I use them every time I get sick with a bug, or when I am on my period, or just whenever I am super potsy.

You could try to talk your doctor into it like the way I do it. See if he will order them on an as needed basis for when you are at your worst, maybe after awhile he wouldn't mind upping them to a more scheduled basis. He might feel more comfortable with that. Hope that helps a little.

I too just started florinef today. I took a quarter tablet and so far I'm a bit shaky and a little nauseated. I suppose a little anxious too. My hands and feet are clammy. Overall not too bad. I'm hoping this works, I haven't been able to tolerate beta blockers or midodrine at all. I don't know for sure but I'm hoping that after awhile I will get used to it and I will stop shaking. So far I feel that I have less blood pooling and feel a little better when trying to stand, but nothing miraculous. Thanks for your post, all the responses have been good for me too.

Andrea

I also worked as an ER triage technician for eight years. I finally couldn't handle the long shifts, even only doing it 2-3 days a week. The last two years I tried working in an office, but even that became too much. I have been home for 15 months and it doesn't look like I will be going back anytime soon. I wish I could find something I could do from home, I need something for myself, I just don't know what yet.

I actually got POTS a few weeks after my second child was born. I was so terribly sick and I also had a four year old to take care of too. They both gave me the strength to get through the days, gave my life purpose and I would never take it back. I feel fairly certain I would for sure try to be a parent, even with this illness, I just got lucky to be pregnant before POTS. Although I do admit it is very hard. Getting through those baby years with my daughter were at times pretty scary. I look back now and I really don't know how I did it. Thankfully I was blessed with a happy baby, who was content to sit with mommy and not run around much. I also breastfed her, which I think is wonderful, but if I had to do it again I think I would have bottle fed, that way more people can do feedings ( she would not take a bottle ever!) I agree with the others, I think if you have an amazing husband and help, that children are a wonderful blessing and truly enrich our lives. My husband also does the majority of cleaning and he run's the kids to their appointments, he play's the cheerleader mommy role at competitions and does his best to care for me too. He is amazing and without him, our family life, the quality of it, would simply not be what it is.

I want to say Thanks to Frugalmama. Thanks for sharing a tidbit about your childhood. I at times feel sad or guilty, wondering if I am taking something important away from my kids. I always try to remind myself that even though I may miss out on going to things and can't be the crazy super mom, I still love them, more than anything and I always do my best for them in all the ways I can. We will create and have created our own sort of normal.

I have chest pain and weakness during winter. Whenever I don't get enough sleep or have any sort of infection it gets much worse. It varies day to day, but I always have some sort of pressure and pain on my chest. I think for me it's because I am usually down with infections all winter. Since the first of October I have been sick with constant infection's, one after the other. I think I had a two week reprieve once and now I'm back at it. This causes most of my chest pain and extreme fatigue. I've been in bed all winter so far. I can usually avoid flare's if I take care of myself, but with the added stress of being sick, I can't keep it at bay. I hope you get feeling better, I too think that sitting and being in bed more tends to make things worse, I just haven't been able to figure out that balance yet.

Mack's Mom,

I was wondering if you had the information for the doctor in Boston, like a phone number or a website link, so that I could contact her. I've tried to find her on the website and cannot find her in the directory. I also am having MCAD issues and am trying to find a doctor. I live in Louisiana, but I will travel if I need to. Any info would be most helpful. Thanks!

Andrea

Carol,

I totally get it! This doctor hopping is not fun, especially because nobody understands POts, let alone POTS and MCAD. I use to live in Utah and family is always wanting us to move back, but there just isn't enough doctors in that rocky mtn area. I live in northwestern Louisiana now and find it a little easier to find doctors in this area, or at least on the east coast. If I have to travel to South Carolina or Boston, it is doable. I hope things work out for you. Maybe your insurance would still pay for a visit, but it would be considered at an out-of-network rate. That's what mine usually does. I still get coverage just not as good, but it's worth it anyways to me. I will have to find the thread where Mack's mom mentions the doctor's. I know of one in South Carolina, but I am curious to hear of the others. Hang in there, many of us feel like we are always going up hill, instead of coasting down it. I know that I often feel like that. Do you take any anti-histamines now? I know for me when my allergist put me on zyrtec it made a difference. I am not on an MCAD regimen, but you could self medicating with some OTC zyrtec or allegra and see if that helps. I don't like to eat unless I am on the zyrtec. I'm hoping that after I get to see a doc, I can try the MCAD regimen, I think it will help, but I will be waiting for awhile too. I'm thinking that it will be March or so, before I will see anyone either.

Andrea

I use to live in Utah and my levels were really low, the highest I got was a 27, but it was usually between 6-16. I never could get it to rise to a normal level and I tried for 2-3 years. I moved to the south a year ago and my levels have come up. My doc thinks that the lower elevation has helped me absorb it better and keep it.

I also have this experience. I have it everyday and it is worse with bright objects or in bright lights. Mine is not due to medication, as I am not on anything that would cause such reactions. I think it just has something to do with having dysautonomia. I have also had a brain MRI, and had a check up with the eye doc and everything was normal. I also get other visual disturbances too. Like really rapid movements of small dots and lines that do not have any color to them. It's kind of strange and hard to explain. It is more obvious out of my peripheral vision and when I am tired. I am not sure what it actually is, I just know that it doesn't seem to be getting worse or causing me any other eye trouble.

Thanks Kate! I believe my level was a 14, plus I don't know if it matters, but I was still coming off of a dose of steroids, so it could possibly have masked it a little, or they could be higher now, I haven't had any steroids in a year. South Carolina is not out of the question. My mom lives in North Carolina and would be willing to take me wherever I need to go. I will try to find someone closer, but if not I may try that.

I am still doing research and trying to figure this all out. I feel overwhelmed at times with all the MCAD info and POTS too. I hope I can get this figured out soon. Thanks again!

Andrea

Me too! I have HUGE pupils. They do constrict in light normally though. I have heard that many of us experience this.

So I really need a doctor to help me with MCAD/POTS. I go to Dallas, TX for many doctors visits so around that area is good. Does anyone know of any doctors familiar with MCAD and POTS in this area, if not the closest? I would even travel a ways away too. I am fairly sure that I suffer from some mast cell problems. I am incredibly sensitive and allergic to many, many things and they make the POTS crazy worse. I did see an Immunologist and he did a tryptase lvl and it was positive, but he says it's not high enough for any type of mast cell disorder. He will not refer me anywhere else, so I am at a dead end with him. I have had scratch testing and ended up passing out within a few minutes of applying the allergens. I could feel my body having a vaso-vagal response. It was instant. I was red and flushing. I was sick for days. This was all before we knew I had POTS, but now that we have been trying POTS meds, I have had no luck in tolerating any. The only thing my body is okay with is zyrtec once a day and my ativan at night to sleep. The only time I have ever had relief from my POTS symptoms was when I was given Kenalog injections for allergies. I was able to eat and walk again. Kenalog is not safe for long term treatment, so I need safer meds. I desperately need to find someone who can help me try to figure this out. My current POTS doc is great for POTS, but he's not so sure about the MCAD stuff. Any help from you guys would be a blessing. I really don't want to try an MCAD regimen blind, I really need a good doc.

You might want to talk to your doc, when you can for later. Maybe one of the other benzo's would work better. I know for me .25mg xanax does not make me tired at all, just stops the nerve twitching and takes the edge off the surges, I dont get wire either. Personally I take .5mg of ativan at night. This makes me sleepy and relaxes the nervous system. It lasts longer and combats the surges through the night. I usually only feel a little groggy in the morning. Perhaps this may not work for you, but I would try. Hope you find something that helps you.

This happens to me as well. I get over stimulated so easy. Too many people around me, cause me to get amped up, lots of talking, excitement and chaos make me feel like I'm constantly on edge. Stress causes the same problem, but even more so. After prolonged stress I can actually throw myself into a hyperadrenergic phase. Nausea, headaches, tachycardia, the whole bit. I have a room where I can just shut everyone out if I need to, take a break from the chaos. I meditate daily and say lots of prayers to keep myself calm and balanced, this has helped alot. It's really hard to keep our bodies calm when our nervous systems are so sensitive.

Sue, I also had that bloating issue! I would look pregnant, and my abdomen would just feel huge. It was really uncomfortable at times!