summer

Does anyone else find they have more chest pain in the cold weather? I find I have two different types of chest pain. One kind is definitely chest wall, it's in my ribs and sternum, and feels like someone beat me up. Costochondritis, I think. The other is different... like a tightness in the center of my chest, sometimes I feel it in the center of my back next to my left scapula. This is the one that has increased with the cold weather. I also feel it when I stand too long. Anyone else? Summer

Hi Jump! So glad to hear that you are doing better. Thanks for posting this. It really is encouraging to hear from those whose symptoms are improving. Interesting that you mentioned chest pain in the winter. I was just saying this to my husband today. I had hardly any CP during the summer, and now, it's back. I think I might start a new thread about this to see if others experience the same. Take care. Remember to pace yourself. Hope you continue to improve!! Summer

1. My husband has often told me that my pupils get small when I am not feeling well. 2. Leaning forward makes me feel like my head is filling up. I can get a headache from doing this. 3. Hands are blue and very cold after 5 minutes.

Thank you all for the great suggestions! Melissa, the giant microbes and medical themed ties are hilarious!! I still have not made up my mind on what to get, and I'd love to hear more ideas. Again, thanks to everyone who took the time to respond. Summer

Hi Lissy, I agree with Tearose... and will add my two cents as well. So far, I have not found any type of treatment to consistantly improve my brainfog. For me it happens in episodes- sometimes for several hours, sometimes all day. It varies in severity, but happens to me to some degree everyday. It can be quite severe- to the point that I have difficulty understanding what people are saying to me. Then other times I feel very close to my "original" self. Because of that, I do not believe I have any permanent damage to my brain. Lying down when I feel this way helps. When I had my tilt table test done to diagnose POTS, I also wore a "transcranial doppler" which was strapped around my head, and measured blood flow in the middle cerebral artery during the test. The doctor was able to show me a graph which recorded the decrease in blood flow to my brain while I was standing. The drop was signifigant and he told me this was the reason for my fogginess. I do not know of any medication that increases the blood flow to the brain, but I'd love to find out about it if there is one! Take care, Summer

Hi Stacey, Just curious, what is an A.S.? Summer

Tearose, Thank you for your post. This is a really good point that I had not thought of. You are right. I'm sure there are ways of compensating for these weaknesses that I am not aware of. It maybe about more than regaining my previous "brain power". I'm really glad you mentioned this - It certainly is something else to consider. Also, encouraging that you found some work with OT helpful. Thanks, Summer

This makes total sense. This is not a brain injury or organic brain disease were I need to create new pathways. In fact, when I'm feeling "well perfused" I seem to have all the pathways I need - they just get really fuzzy at times! The plan being suggested is not an at home "do-it-yourself" program. It would be like rehab for stroke patients - with memory drills and learning to tolerate interference while concentrating, etc. Has anyone else been asked to try this?

Yes, I know this is true for me too. I would say it is even more of a trigger for me than physical exercise (well... light exercise). I'm thinking, again, this is advice from someone who does not truely understand POTS. There must be a reason why our autonomic docs are not adding this to their list of recommendations. I agree that when brain fog is at it's worst, the best thing I can do is lie down. I can't imagine adding to the brain strain by doing mental exercise.... Well... actually I can, and it scares me. Thanks for your reply.

Just wondering if anyone has gift ideas for great doctors. They are rare, but I am blessed to have one who has been so supportive and kind. I'd like to express my appreciation with something nice, but I'm having trouble coming up with ideas. Does anyone have any good ideas? Summer

Cognitive rehab (brain exercise) was brought up in a recent post. After a cognitive assessment, it was recommended by the psychologist that I begin cognitive rehab to improve my brain fog. Is this likely to be helpful? Can we do any harm to our brain by increasing cognitive demands when blood flow is already insufficient? I'm also wondering if any of you ever had your diagnosing ANS specialist recommend this. I know when I was diagnosed, the recommendations were very detailed including exercise, meals, fluid and salt intake, medications, even when I should take my bath! But no mention of cognitive rehab for my brain fog which has always been signifigant. I guess I am concerned that this might only exhaust me more and make things worse instead of better. Anyone have any experience with this? Thanks, Summer

Hi Green, This totally makes sense. Do you know of any articles or studies that show this? Thanks, Summer

Do you suppose people with POTS and Raynaud's are more likely to have this type of cerebral vasoconstriction?

After all that has gone on, I can understand your apprehension about the appointment. Maxine, I really hope you will finally meet up with someone who is able to put this all together for you and get you pointed in the right direction, treatment-wise. Hope all goes very well for you on Monday. Let us know! Summer

Janie, Sorry I am late posting this, but I have not been up to posting much this past week or so. Just wanted to let you know that I am sorry to hear that your licence was not renewed. I have a feeling that, like me, you were well prepared for the fact that you might not be returning to nursing anytime soon. As you know, I was doing a very limited return to work program, but it is discontinued for now, as I really was not able to do it. Whether you ever return to nursing or not, your years of experience and kind heart give you much to offer in so many ways. I know you have a very positive outlook on life and that will help you see opportunities in the future. For now, enjoy your loved ones, and work on getting better. And remember, were God closes a door, he opens a window. Take care, Summer

I so much agree, WB:) Thanks for your reply. Take care! Summer

Hi WB, Of course, I do not object to anyone bringing awareness to autism. I do, however, not believe it is helpful to people with autism to drive a wedge between them and the medical community. Within the past few months, Jenny appeared on the show "The Doctors" which turned into a big shouting match with one sided pitted up against the other. I'm not sure that is the best way to make progress for our kids. Many of us are advocating for our kids everyday and even though we are not able to be on Oprah, or The Doctors - maybe we are not even doing it on the internet - we are at home "in the trenches", working with our schools, communities to open doors for our kids. I have come across so many caring people were my son is concerned. Having a good relationship with those people has gotten me much farther than alienating them or arguing with them. Yes, your are right we are all in pursuit of the same thing - help. I guess we just have different views on the best way to go about that. Summer

Hi Marcia, I am not offended by your post. The truth is there are many treatment options for autism, and it's not like we've been sitting around doing nothing for 13 years. We have chosen other options and worked very hard at them. The truth is none of us can do "all" that can be done. We are all limited in our time, energy and resouces and have to make choices. We chose treatment we thought had the best evidence for success. Our son has made tremendous progress, and over come many difficult behaviours. I fully expect him to live independently and happily as an adult. He doesn't seem to mind living his life "this way", and we have chosen to focus on his areas of strength and develop those so that he can perhaps have career options that he will enjoy later. We don't really feel like we should be trying to "fix" him, because we don't think he is broken. How do parents and children feel after spending years and $$$$ trying to cure autism only to find that their child still has autism? I can't help but think that this must be devastating, and that children must somehow feel they have been a disappointment to their parents. I will not have my child feel that he is anything less than God intended him to be. This is not to say that some children with autism don't benefit from diets to avoid foods they have sensitivities to. And it's not surprising that you have benefited from the GFCF diet since you have celiac disease. But I don't believe this is the key to recovery from autism and I know many parents who have spent thousands of dollars figuring that out. We don't try to make our children "recover" from down's syndrome, or other developmental disorders. We help them to develop to their greatest potential, and accept their differences. Why should parents of children with autism be somehow made to feel that they have failed their children because they were not able to cure them from a neurological developmental disorder? Interesting discussion:) Do you have a child with ASD? Summer

Marcia, I was holding back in responding to your posts, but this is truely something I feel strongly about as the mother of a child with autism. The "autism community" is very broad and includes parents, and individuals with autism, many of whom have chosen other forms of treatment than GFCF and the DAN! protocol (Defeat Autism Now!, for those who are not familiar with it). In fact, many from the autism community are offended by the idea that autism is something to be "defeated". Some of us are ready to accept our children as they are, and do not feel we have failed if we are unable to bring them to "recovery". My child who is now 13, has progressed from classic autism as a toddler to a very high functioning child with high level speech, a sense of humor, emerging social skills, and 98% this year in academic math, but he continues to have autism, and always will. It is part of who he is, and we are fine with that. In fact, we love that about him, and encourage him to feel good about who he is. When he was about 10 he was present when a friend of mine mentioned "defeat autism now", he was very upset and interupted saying, "Mommy! Why would anyone want to defeat autism? you can't defeat autism!". It is one thing to talk about defeating autism when your child is 3 or 4, but quite another when they are old enough to know you're are talking about something that is part of who they are. What kind of message does a name like this send to our children and adults with autistic spectrum disorders? Google that - there are lots of people who are very offended by that name. Money involved in vaccinations? How much money do you suppose is involved in selling supplements to families with autism? How much money do you suppose Jenny McCarthy is making? It's a whole new career for her. I'm glad her child has experienced improvement, but so has mine without the DAN! protocol. Not many parents have the money Jenny has to use all these expensive therapies. I know families personally who have lost their homes and their children have not "recovered". It is not difficult to know whether a child with autism has POTS or NMH. Does he have a heart rate increase on standing? Does he faint or have low BP? And does he have fatigue? If he's jumping up and down on a trampoline all afternoon, probably not. I feel so strongly about this because I believe many families with autism, and people with CFS are vulnerable to this type of persuasion because as of yet, the medical community has not been able to offer much in the way of effective treatment. This is very unfortunate. It does make people easy targets for promises of recovery that do not need to be backed up by research. Rama is right. This is all speculative and there is no real evidence of any connection between CFS and Autism. Just thought you should know that there are lots of people in the autism community other that those who subscribe to the ideas of DAN! and who have worked very hard for and with our children - with great success. Summer

Dizzy and Waterbaby, Other than sensory issues, which are common to many neurological conditions, what similarities are there between CFS/POTS and autism? I don't see it. Summer

Do you mean that a severe reaction to an SNRI could indicate deficiencies in norepinephrine transporter protein? Summer

Hi Maxine, I'm glad to hear that the CT did not show any cancer. That is wonderful news. I'm sorry to hear about your ongoing issues with your breathing and CCI. It must be really frightening - And frustrating to be continuously trying to find someone with the knowlege, and the interest (and the compassion) to try to help you. It must be so emotionally draining to be dealing with this for so long. I can understand your concern about things like emergency intubation, etc. Do you have a medic alert bracelet indicating your cervical/cranial instability? Even though the docs and nurses in an ER might not know much/anything about CCI, you can be sure it would get their attention quickly and make them cautious, probably chosing to treat you as if you had a neck fracture. Also there would be a number they could call immediately to get info, or precautions they should take because of your condition. This would be important info for any emergency responder to know in the hospital or out in the community. I worked for some time in an ER and can tell you that a medical alert bracelets are looked at right away. Before anyone has time to go through medical records. Perhaps you have one already. Summer

Hi Maxine, We are all so individual in our responses to meds, that I hesitate to post about a bad experience, because it may work very well for your friend. I believe lots of others here have had success with effexor. For me, it made my symptoms much worse. Actually, I only took one dose which they told me was a pediatric dose (37.5mg). I had an increase in all my symptoms, and terrible anxiety which I do not usually have. I have not tried any other SSRI or SNRI since. In the Winter 2009 dinet newsletter, there is a question answered by one of the doctors (I don't remember which one) that talks about this (on page 7). As I said, I know some others have not had problems, but it seems that SNRI's are not so great for some of us with POTS. Hope your friend has a better experience. Summer

I have some facial tingling/pain with my migraines, but not related to eating. I do get some pain between my shoulder blades fairly often, similar to the chest pain that I feel, only from behind.

Rama, really early in the course of my past 2 year illness, before diagnosis, my doctor attempted to treat the tachycardia with a BB. Without increasing salt, and water (and eventually adding florinef), this dropped my BP and made me feel terrible. One day I ended up in the ER and the doc there switched me to cardizem, a calcium channel blocker. I was referred to a cardiologist. That appointment took a couple of months to get. In the mean time, I started to feel a little better on the cardizem, and yes, not so brain foggy. When I finally saw the cardiologist, he was very quickly able to discern that I had no problems with my heart or anything else and that I did not need to be on any meds - so everything was discontinued. I began my descent again. I did not think about the cardizem again until recently, but have wondered if it might be worth another try. It's hard to know whether it really helped or if it was just one of my better times. This all happened in the spring (not too hot, not too cold), so I don't know exactly what was the reason for my improvement. Do you think there is good reason to believe that CCB are a good treatment option for POTS - the vasocontrictive kind? Summer