Ringing of the ears.
AnonymousMarch 8, 2010 at 9:39 am
I have a 16 YO daughter with CIDP. She receives Gamma every 3 weeks. 2 consecutive days. 45 mg each day (2 big bags)
She was diagnosed in September, received her second infusion in December and now we go every 3 weeks.
We always get a migraine on day 4, but this time it was accompanied by ringing in her ears, This has been 9 days of ringing.
Anyone experience this and does it go away?
She describes it as having gone into a really loud room and when you leave you have the ringing in your ears, only it has not gone a way
March 8, 2010 at 12:58 pm
Hi Lianne,It is probably tinnitus. You can get it from all sorts of things, ear infection, wax, sometimes we would get it when we used to get the migranes post infusion (before we started splitting up to avoid headaches) I would suspect maybe the blood vessels that cause the migranes swell and cause the issue with the ears? Also, do you get regular blood work? Anemia can be a side affect of ivig, I think while investigating tinnits for us a couple of years ago that anemia could cause tinnitis? Not sure, it was a while ago, you should check.
About the headaches. We used to get a load once a month, over four days, when we split it up to every 2 weeks, the same amount, just split up, the headaches went away. As well, it keeps the titers up, meaning that you do not go all the way down to the full life of the ivig, you are catching before it falls. For instance, maybe since you go every 21 days, you could go every 11 for one day. That is what worked for us, but it may not be for you, something you should talk w/doc about. I just remember how badly we suffered with those headaches, now they are gone!!
Have you looked into home health, if your ins. comp allows it it is awesome. You can do it in your home, we do homework, watch tv or whatever, plus we do not have to go to the infusion centers and see the other patients who are so much sicker. That was hard for us when we would see cancer patients at the docs, I can’t even imagine how we would have handled that bi-weekly. BTW, do you guys miss school? If so, you can get a 504 or an iep. The 504 is less invassive, but will protect her from late assignents of missed gym classes on days she is not able to participate. As well, it will pave the way for a chronic illness inclusion that will allow you to have an at home tutor for every day missed. Typically you have to miss 30 consecutive days before you get a tutor but if you have a chronic illness you can have a tutor for an hour for every day that you miss. (not sure if all states work the same) Keep us posted
AnonymousMarch 8, 2010 at 9:12 pm
I would ask the following? How long do the infusions take? Do they test Blood Pressure during the infusions? And It’s only showing up several days AFTER Infusions? First off, I’d ask to see what the BP rates are from the infusion clinic. Then I’d get a copy of those and sit down with your prescribing doc to simply ask…does A effect/affect connect to B effect? Meaning the speed/rate of the infusion to the action of the tinnitus. They could be unrelated, or they could actually be related. Go web up the ‘full prescribing information’ of the infused brand of IVIG and see IF tinnitus is listed as a side-effect.
Next I have to ask, how well was she ‘hydrated’? I’ve found I can get side effects worse than they should be IF I’m not well hydrated. I do a ‘gatorade’ 2-3 days before infusion, then drink water and other fluids like crazy…till I almost slosh. While I now have a port, I found it was easier before to get a catheter in me the more hydrated I was, and now, w/the port? The fewer side effects I get afterwards. That includes lots of water and fluids for about 2-3 days afterwards. Be kind to the liver and kidneys with the liquids as they are flushing out the by-products of the IG and also of the other immune by-products as well.
Talk to your docs please, and hydrate! And then let us know what all happens and what the docs say. Hope and hugs for sure!
AnonymousMarch 11, 2010 at 11:52 am
HI, thank you both for this wealth of knowledge. We have great insurance, however they are very Picky about having this done when there is not a neurologist in the building (side effects they say). Unfortunately we do not live near the city where this is done so it is two whole days out of our lives each time, 1.5 hours there and 1.5 hours back and we have to alot 5 hours for infusion as sometimes they have difficulty with the “stick”. Yes they told us the headaches are caused by her dehydration. And yes the Tinnitus was post headache, good to know your story. Gotta love those…AARGH! Thank you for the anemia tip, we have a GP appt. soon I will ask for blood work on that one, The ringing is strarting to subside, we go again for treatment on Tuesday. yes we miss school, we are on a 504. We have applied for tutors unfortunately she is in honors classes and no one is stepping up to the plate to do her tutoring.. ARGH again!
How long before they got you a port? I was wondering about that. They blow the veins in her arms all the time and it is frustrating when we have an unusable arm because its not healed properly in time.
thank you both so much for responding, it is nice to finally hear someone elses story. We feel all alone out here. We are in Massachusetts.
Good luck to you as well.
I’m sure this isn’t the last question.
March 11, 2010 at 5:26 pm
About the neuro and reactions. If you have gotten several (2-3 or so) the probability of anaphylactic reaction is pretty remote. Typically for the first infusion, there is blood work done to see if you are allergic to ivig. Did your insurance TELL you only at the center or is it the doc, they probably get more money that way, mark up on drug and infusion nurse, space, supplies etc. We had to do it in the hospital the first time, then at home in the begining there was a lull of about 5 months between treatments (gbs dx vs cidp dx) so we did have to go back to hosp that time but it has been at home since. Maybe you could call your ins direct. We are w/bcbs, they have these programs where you can get a case manager to be aq go between of sorts. The stress of going back and forth was such a pain. If you could do it at home, you could even ask about divinding it up at the every 11 days, that helped us so much with the reactions. We tried pre-meds around the clock for 4 days post, did not seem to help, notheing but the splitting it up helped. Solumedrol as a pre med wouldn’t have worked because the headache came 4 days post and the solum would not stay in the body that long.
About the port, best thing we ever did. We got one about 5 months after the firm dx, as it was difficult to keep the veins going for four days. If you do get one, there are things to consider, such as place ment regarding bra straps, bathing suits etc. Also, for the first port we had general, not fun after, for the second one, we did twighlight, like night and day, like nothing happened. There are other benefits to twighlight as well regarding autoimune diseases and the imune system and general per a neuro aneasthes. that was in the next cubicle to ours. Will elaborate if you like. I would really double check yourself w/insurance, because actually, they would probably prefer the cheaper route, and I am almost posoitve it is cheaper at home, w/ better care. The nurse checks vitals every half hour, (in between xbox and bb guns of course!!)
504, I am sure things differ state to state, but regarding provisions, I bet you could search on line for what the laws are. They might be dropping the ball, are there other high schools in your district? For instance, we have a couple of aproved tutors for the entire district, that includes all the elem and midd schools. So there may be a home bound tutor somewhere else in your district. They have to supply one for you. I was so amazed at how much we learn in one hour of home tutoring!! I can pm you my number and you can call if you like.
AnonymousMarch 14, 2010 at 10:59 am
I Googled “CIDP & tinnitus” and came up with this link:
[*]Cranial nerves may be involved, particularly CN VII, with paralysis of both upper and lower facial muscles. Diplopia can occur with the involvement of CN III, IV, or VI. Rarely, bulbar muscles (eg, palate, tongue) can be affected.
[*]Papilledema with pseudotumor cerebri syndrome (eg, headaches, transient visual obscurations, pulsatile tinnitus, visual field defects) are observed rarely in patients with CIDP and are due to a very high CSF protein level (usually >1000 mg/mL).[/LIST]How high was her CSF protein level?
Emily has cranial nerve involvement (her right eye turns in towards her nose & gets stuck) but she never complained of her ears ringing, that I remember. Her protein levels were 90 (1st spinal), 95 (2nd spinal, 3 months after original dx) and 50 (11 months after original dx w/routine IVIG).
Regarding the port, like Dawn said, it was the best thing we’ve ever done. Emily was 4 (almost 5) when she got it. The day after the surgery she felt well enough to go to the Renaissance Festival & walk around all day. Emily is a very tough stick (her veins are very “valvey”) and it would sometimes take up to 7 attempts to get a good vein. It was awful!
We too do home care & it has been a blessing. If you call your insurance company you could make the argument to them that hospitals are full of illnesses & every time you go, you are exposing your daughter to all of those germs, which will end up costing them more money in the end. Tell them she is falling behind in school because of having to drive to the hospital. Tell them at home she has a nurse who only has ONE patient (not 4, 5 or 6) and she will be monitored better because of that.
We were given an Epi-pen to keep at our home for Emily – just in case she had a reaction. I was taught how to use it & that does make me feel better. Emily does really well with her infusions though (KNOCK ON WOOD!).
I just learned you can claim your travel to & from dr visits (I’m certain it includes to the hospital to) on your income tax returns. It’s definetly something worth looking into for you.
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