Having a bad day today. It he dizziness and lack of coordination is pretty bad, and nausea is almost unbearable! The headache has progressed to hemiplegic migraine stage. My vision is almost gone right now due to the aura.I can’t stay up right, keep falling and fainting.i can’t go to the ER because all they do is give me benedryl due to my allergies and sensitivities to most all pain meds. I have tried all my go to home remedies.
I just need to vent before my husband gets home. He is so kind and understanding that it almost hurts him worse to see me like this! (Heck, he even suffers Pam’s for me!lol!!!hes been a god send in my life!)it’s also nice to vent to people that know what I’m going through!
Like I said just venting, it seems to help so it doesn’t build up.
Thanks for being here and reading this.
I totally understand....Please vent here anytime. We all have & will again. I am sorry you are having a bad day, I am also having major vision & dizziness problems today. My bed is actually calling my name loudly :-). I will say a prayer for you. I know your Chiari Journey has also been difficult at times. Please know you will always get understanding & support here. This is by far the best forum in the whole BF's community. We are like a big family.
First I want to say thank you for being here, the support is amazing. My husband has been so wonderful and supportive thought this all, and so are my kids. Now that they have all left the nest my husband really fears me being alone all day, even if its just for moral support or doing the little things for me. But not a day goes by that they don’t call and check on me (my oldest is28!!!).
I was also wondering if there is another cream I could try for the muscle pain. Ii tried the arnica because I heard so many wonderful things about it. Sadly to say that I am severely allergic to it, apparently the ingredients are related to the daisies and rag weed family. Boy did I get reemed when I went to the dr!!! I fell this morning walking mt service dog. I got banged pretty good.mostly bruising and road rash.
I have not been tested for pots. My father actually died in 2004 from the vascular form of EDS and my drs still refuse to test me either, they have said that it inconsequential! I lived in a very rural state when I was diagnosed with cm and was alway told that my symptoms were psychiatric in nature, or dr shopping, or drug seeking until 2006 when I had decompression surgery. I never could figure out the drug seeking accusation due to the fact that I am allergic to most all narcotics. Even after surgery the only pain med I received was ibuprofen and Tylenol!
Iam currently taking caffeine for the migraines in a pill form and am on inderal As a prophylactic which does help some with the heart palpitations,ringing in the ears and dizziness when I change positions. I now live in a larger state and my PCP is trying to figure me out since I haven’t had any follow up from my surgery (my neurosurgeon actually said that I was cured and wouldn’t need follow up).
Abby said:
Sorry Barb I usually get up dizzy and go directly for the coffee pot. Believe me it helps me. Mornings are a challenge.
I just found out (by e mail!!) that when I had knee surgery in June that my screening for EDS was positive? I didn’t even know they tested me. I had surgery because of my knees are chronically dislocated they thought it was a meniscus problem. They starte with the left and were going to do the right one later. They found that the meniscus was “pristine”, I only had a plica band so they removed it. Because of the chronic dislocating of most of my joints they decided to test me for EDS,. At least they did it, I just don’t understand why they let me know through an email! So nonchalantly!
I am on a beta blocker for my migrains, on the max dose. I had ultra low blood pressure, always have. And my resting heart rate is 135. The meds haven’t changed that but have helped the frequency and severity of the migraines (most of the time). It was also mentioned in the email that because they suspected POTS by my previous dr this dr has confirmed it is? What I’ve never been tested? He doesn’t want to put me through the testing and aggravate my symptoms because they are so severe. He also doesn’t want to change meds because this one hasn’t lowered my already low BP ans is helping somewhat with the migraines.
I’ve had very little luck controlling pain, due to my allergies to the pain meds. I have some luck with acupuncture, biofeedback, meditating and heat and ice, it makes it tolerable. I was going to a psychologist because my dr said that no one could go through all of this and not have depression. But I "graduated"out out of that because he said that there are no signs of depression and that I am the most positive person he’s seen. (I guess that’s something!).
I am trying to get in to the WI chiari center, since I’ve not had follow pu for the chiari surgery since 2007, and have suffered a TBI since then.
Hope the trip to Disney goes well!! How exciting!
Thanks for listening
Arnica ia a mountain daisy. I will ask Wendyanne what else might work for you. She is amazing. I can't wait til we get our Natural Healing Group started.. I am focusing on & may even make an app. with a local Homeopath. I haven't been this excited about healthcare possibilities since I have been ill.
Tracy
BarbSalisbury said:
First I want to say thank you for being here, the support is amazing. My husband has been so wonderful and supportive thought this all, and so are my kids. Now that they have all left the nest my husband really fears me being alone all day, even if its just for moral support or doing the little things for me. But not a day goes by that they don't call and check on me (my oldest is28!!!). I was also wondering if there is another cream I could try for the muscle pain. Ii tried the arnica because I heard so many wonderful things about it. Sadly to say that I am severely allergic to it, apparently the ingredients are related to the daisies and rag weed family. Boy did I get reemed when I went to the dr!!! I fell this morning walking mt service dog. I got banged pretty good.mostly bruising and road rash. Any input would be helpful. Barb
I had to give up and visit the ER for my hemiplegic migraine. My blood pressure was extremely low 56/undetectable, heart rate was 198 so they started an IV, and gave me phenergan and Benadryl. This made feel like a million bucks. I still have the right sided hemiplegia, I look like I’ve had a stroke, but feeling much better! My dr still refuses to change the beta blocker and can’t up the dose because I’m maxed out dosage wise. They sent me home to try and sleep it off, but I can’t sleep. Just sitting in a dark room trying to relax.
On a side note he did explain that the high heart rate is probably why I’m so thin, my matabolism is in hyperdrive!it always has been.
Feeling much better today! Still weak, slurred speech and painful neck and shoulders, but feeling pretty good. Shari, I do use ginger and it help most of the time if I can take it before I’m too dehydrated. I have an appointment Monday with my PCP to go over trying to change the beta blocker. I have tried quite a few but they lowered my BP too much, there must be an alternative.
Thank you for the support and suggestions. It means the world to me that there are people who understand and know exactly what I’m going through with these dr’s. sometimes my husband and I had worried that we are just over reacting, now we know we are not alone.
Just an update from my dr apt. We tried a new beta blocker, it lowered my already low BP too far. Starting me back on Inderal at lower doses so I don’t get rebound migraines. They are thinking they are further progressed chiari headaches after my recent head injury (Ya’ think?lol!). Then they are trying to expedite my paperwork to get me in to the wi chiari center. It should be easy, they are the same hospital and partners with my dr.s and insurance!my neurologist that sees me for my seizures is also getting involved,he is now sending me to a geneticist for the EDS (and suggesting all 4 of my kids be tested also. I know my youngest has it.
Thank you for all the suggestions and advice. You guys seem to have given my back bone back in dealing with these doctors.
Beeba said:
Sometimes I feel like I want to be spiro Agnew after Reagan was shot - ok I am president now!! Taking over this whole operation. Barb your experience is very bothersome. If a med isn’t working I can’t imagine a dr saying well you maxed out so that is it. BULL----!!! There are about 10 different beta blockers. If you have POTS it may need to be opposed with an alpha blocker. Inderal is a pretty old med - there are newer meds on the market. Drs just stick to the ones they know are tried and true. But with chiari damage thrown into the mix you have a different problem. People often want a dr who has been practicing forever - sometimes a young new dr is better and more up to date and doesn’t think they have seen everything. Don’t let this go - follow your instinct - you know your body.
feel better!