AnonymousJune 3, 2009 at 11:25 am
I was diagnosed with cidp in January of this year after six months of feeling wobbly and falling over all the time After three nuros saw me one finally came up with cidp i have been reading posts on here but am just now able to post. Well all of a sudden three weeks ago i just started passing out They have done all the test on me Tilt table eeg you name it I have had it done but am still passing out with no warning at all. I am on the ivig treatments and they seem to be helping but I guess my question is does anyone else just pass out from this diesease. Also does anyone have severe back pain from this. I have a bad back but it lately seems to be ten times worse. And what may help me Thanks Dave
AnonymousJune 3, 2009 at 4:09 pm
Hi Dave! Have you been checking your blood pressure alot! Sometimes medications can cause the blood pressure to make you pass out. How about eating! Are you eat or going long perioids without eating. Hypoglycemia can make you pass out. I stay dizzy alot myself and have been known to pass out. I too have CIDP but also have Lupus.
With me if I get too hot with this CIDP I get dizzy and will fall out easy! I stay in a cool room and that seems to help. Welcome to the site! Wished I could help better answer your questions. Check you meds you are on too! Some side effects can cause this too! Hope you feel better soon!
June 3, 2009 at 5:43 pm
Hi Dave, welcome to the site! I too am a relatively new member of this forum.
I’ve had CIDP for the past 10 years and have NEVER passed out due to my neurological condition, so I strongly doubt that your CIDP is the root cause.
Nor would I tend to suspect that it’s your I.V.I.G., but since it’s a blood byproduct one can never be absolutely certain. I know that I.V.I.G. has been a [U][I]HUGE[/I][/U] [U][I]BLESSING[/I][/U] for me. That’s not to say that it doesn’t affect people in ways that it doesn’t affect others. There’s a long list of warnings & contra-indications associated with I.V.I.G., so you probably should discuss your entire medical profile at length with your neuro if you haven’t already done so.
Now, I do strongly agree with LindaH that your other meds might be causing a sudden drop in your blood pressure. (Are you still driving?) And her suggestion to make sure you’re eating a healthy, balanced diet is certainly sound advice. Also, and this is VERY IMPORTANT… listen to your body when your CIDP causes you to become fatigued. GET MAXIMUM REST! With CIDP, you have to PACE YOURSELF! Ask your doc for a sleeping aid if you need it. Always remember, your body can only repair itself while you’re sound asleep.
It certainly isn’t fun having CIDP, in fact, it’s a fairly rotten deal. But it can be managed. No one deserves having this condition, but you just have to play the hand that you’re dealt in life. What other choice is there?
On a personal note… When I get down about having this lousy condition, I try to remember that there are many, many others out there who have the disease I was first diagnosed with; ALS. I’m certain they would ABSOLUTELY LOVE having a condition as manageable as CIDP. ALS is otherwise known as Lou Gehrig’s Disease, and typical life expectancy is only 2 to 5 years. A slow, agonizing death typically results from suffocation. (Stephen Hawking is the RAREST of exceptions, having survived as long as he has).
So you see, as bad as it is… and it is bad, but it could be much worst. I’ll be praying for you and all the others on this forum who have this dreadful condition. I pray that a real cure will be found soon, but MUCH MORE research is badly needed! Since CIDP is so rare, it’s just not considered a priority for researchers.
In conclusion, try to keep your chin up, and remember to keep paying it forward!
Kevin (a.k.a. KHS730)
AnonymousJune 3, 2009 at 6:08 pm
Hi Dave 🙂
I have CIDP as well and do have episodes of passing out . I have done it since I first had GBS . They never really found out why but in the last year or so I have developed severe anemia and have had to get blood transfusions. But what my doctors have figured out is that the CIDP has been attacking the development of my red blood cells ….thus the anemia . As soon as I have my IVIG my hemoglobin goes back up and hangs around 10.8 to 11.2 . Still low… but much better . If your doctor does routine blood work then they would probably have mentioned it …however if not …you may have that checked 🙂
Be careful with the passing out 🙁 I have hit my head a time or two ! Not fun 🙁
AnonymousJune 3, 2009 at 7:42 pm
Thanks for all the replies I have had my pressure checked changed medicine I have even passed out while talking to the nuros and being hooked up to a eeg blood pressure cuff etc The scary part is that i have no warnings or anything and it seems to be getting worse from a couple times every three days to six or seven times a day. Today wasnt a bad day but have passed out five times. The nuros tell me its my heart witch checked out fine and the heart drs tell me its nurological im starting to get frustrated I have a rooted feeling that it is the cidp but am not a dr and am not sure
AnonymousJune 3, 2009 at 8:28 pm
Hello again Dave! Certainly not trying to have any disagrements here! They put me on Elavil for my nerve damage to start with a few years back. Along with prednisone. I started passing out and my blood pressure bottomed out really low. They caught the problem and took me off the Elavil right away! I was in the hospital then so it was easy for them to figure out what was going on then.
Each person is different with medications. So it might possibly be a medication causing this passing out spell. Might but then it might not be! And then again the IVIG may be the culprit too for each person is different and some people react differently to medications.
Are you a smoker? Cause smoking with any kind of nerve damage can really do some major damage. Sometimes the blood vessels where the nerves connect can cause constriction to the vessels and cause a person lack of oxygen. That can make you dizzy and pass out.
A number of things could be a culprit! I know with my CIDP but I have another disease with it Lupus! I get alot of problems with Vertigo. The heat too if it’s really hot and I am flaring I can pass out!
Either way you really need to let those doctors try to find out the cause. I know a few of us in here with CIDP have got B-12 issues. I have to take the shots. Only way they can tell that is testing for Intrinsic Factor to see if your are absorbing B-12. If that gets very low it can cause passing out spells.
My best advice is for you to get a second opinion from another doctor. But a Neuro doctor! They might be able to figure why this is happening.
In some cases with people that have severe nerve damage another problem can happen. You can have Sensory Nerve Damage, Motor Nerve, Motor/ Sensory and also Autonomic meaning it attacks vital organs. Automonic type can damage nerve cells in the heart. Causing a Cardiomyopathy. In some cases some people can pass out with that because they are not getting enough blood to the brain.
I would definitely try and get the heart checked out. My grandmother had problems with this. She was having heart attacks and showing normal EKG’s! My mother did the same thing showing a normal EKG and had 2 blockages that were 90 percent blocked. She passed out at a restaurant with her friend. And then told me what happened. Took her fanny to the doctors and he did an EKG and it was normal. I demanded a stress test and they found a problem. Sent her to get a Cath and then had to transfer her to Pitt where they did the stents.
Keep insisting they check you out. It could be a number of things causing this!
One of my best friends died of ALS! His name was Robin Barnes! He suffered! We grew up together in the same neighborhood. Played football together, rode our bikes together and even became high school sweet hearts! He ended up marrying my best friend in school. Then we he turned 27 he developed ALS! Tore me apart! His parents just had their 60th Wedding Aniversary! Sad to see them have to baby their baby son!
I wish you my best and do hope they figure out what is causing it! Good luck Dave!
AnonymousJune 3, 2009 at 8:42 pm
It is really easy to blame all the problems on CIDP. In this case, I don’t think so. CIDP is an attack by your immune system on the myelin sheath that surrounds the nerves in your peripheral nervous system. That would generally take away the passing out thing.
The meds we all take have such horrible side effects, many a person has said we would die from the treatment way before the CIDP would kill us.:eek:
Stress is an aggravating factor. It makes the CIDP act worse. It also can directly affect your back. Tension in the body will cause the back to tense up, and in a weakened back, it could be the tipping point. Then depending on the meds, passing out could follow.
Does CIDP cause these things? not directly. Can CIDP make these things worse? Yes, as a helper.
How to avoid it? Reduce stress in your life. People say, well I can’t reduce my stress levels. I have a busy life, and it is stressful. Well, the choice is yours, reduce the stresses, or deal with the consequences. Pretty straight up.
Don’t take this the wrong way, I care about you and what happens to you. I hope things work out well for you. CIDP will change your life whether you want it to or not. Take care of yourself, and you will last longer.
AnonymousJune 3, 2009 at 9:05 pm
Hi again Dave 🙂
Yes I do stop passing out . Before I get my IVIG when they test my red blood cells they are small and they only last for about 20 days and usually red blood cells are big and bold and last an average of 120 days .
After my IVIG my test indicate I am making the normal size red blood cells and they are lasting much longer .
However I don’t pass out as much as you ….. Either way it could be something you might check into . I think everyone else has some great advice as well . Could be meds , blood pressure or a number of things . Keep me updated though …. I am interested to know if perhaps you are having the same issue as I am .
In the meantime I hope you feel better !
AnonymousJune 4, 2009 at 2:07 pm
I had a thought…are you really passing out or perhaps you have developed a seizure disorder. Absence seizures or petit mal seizures can feel like passing out but are not. So many things can cause one to pass out. I would think the drs.. would get right on this. 6-7 times a day is a lot….it was that statement that made me think seizure disorder.
Anyway, just a thought. Take care of yourself.
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AnonymousJune 3, 2009 at 11:14 am
AnonymousJune 3, 2009 at 1:40 pm
Hi Dave. I’m no expert, but I’ve had bad GBS/CIDP symptoms since my flu shot 1 1/2 years ago. One of the first things that happened was severe dizziness and wobbliness when standing or walking. At times everything would go black and I’d almost faint, but would just hang onto a wall till I could recover and sit down. Lately, I’ve been having those fainting spells again, but I think in my case it’s because of all the toxic pesticides and herbicides in the air right now because of people spraying their fields and lawns and trees. I know that I am allergic to these chemicals and I get dizzy and sick, my heart gets weaker, etc.
My advice is to make sure you are eating and drinking healthy foods and liquids, especially the water you drink. That will help to keep your body properly nourished, and you can deal with all of this better. Stay indoors and at least avoid these environmental toxins when you can, because they are known neurotoxins which affect your condition.
I have a bad back too; some herniated disks, especially lower in the spine. The back pain was terrible, but I found relief when I got a foam mattress for my bed, which moulded to my back shape and heated my muscles and lessened the nerve pain. I also found that I could only sit on hard chairs, covered with an afghan, because any time I’d sink into a chair, my back would hurt terribly. Watch out for your posture. This illness weakens us to the point where we slump, and that drags the other muscles out of position and causes more pain.
I found it helped to have flat bed-rest for an hour; then get up, do some work; then more bed-rest for an hour, then get up again and do some errands, etc. My back is just too weak to deal with standing, sitting, walking or working the way I used to. I have about 1/3 of my former strength, but am still trying to do all my former work, so I’ve learned the hard way how to pace myself better, and some of my former pastimes have fallen by the wayside.
I wish I could be more help to you. Each day of the past 1 !/2 years has been so hard, and I know you are struggling too. Can the doctors advise and help you? Remember, we’re here for you, when you feel terrible and when you feel better; we’ve got each other in this group, and that helps a lot.
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