Finally Off Diamox! (Cerebral Stent Update + Tapering Diamox Side Effects)
Вставка
- Опубліковано 6 жов 2024
- March 10, 2020 I had a stent placed in my left transverse sinus. I have been given the go ahead by my neurosurgeon to taper off diamox. I talk about my side effects, and coping with recovery.
Instagram: / jaymeecisneros
My Etsy Shop: etsy.me/3hQUHPO
___________________________________________
Some other videos that give more context:
3 Month Update from Stent: • 3 Month Cerebral Stent...
Stent Surgery- • Cerebral Stenting For ...
Why I got the stent- • Health Update: Getting...
My Angiogram (Complications and Recovery)- • Cerebral Angiogram for...
First few months on Diamox- • Side Effects of Diamox...
My first Lumbar Puncture and diagnosis story- • Pseudotumor cerebri at...
Ooooh my goodness so happy to find a channel with someone currently going through this! Feel like I’m able to connect more for some reason be seeing the other videos being so many years old. Lol weird maybe. Anyway, thank you so much for sharing your journey 💖
So happy for you! My daughter was diagnosed on Wednesday. Scary to say the least. Thank you for courage and transparency!
I am so happy for you, look forward to the updates. I have been looking into the stent route also. So glad you are off Diamox!! I know that must feel great. I am still waiting for appt to get my optic nerve looked at. Keep up good for. This gives me hope, thanx for sharing
Congratulations! So happy for you. Unfortunately my optic nerve sheath fenestration surgeries did me no good… Having to resort to the tubing in the brain that goes down the spine and lets out in the abdomen for the fluid buildup. Hopefully that’ll save me a lot of pain with the headaches and the constant spinal taps. But absolutely happy for you. And yeah I totally get what you mean with the soda thing.
Thank you for sharing your story. It has been helping me along my journey. Stenting in 3 weeks for me.
Thank you so very much for sharing your journey!
thank you for the videos. They have been helping me with my IIH journey. It's 4/2022. I was hoping you could provide a 2 year update.
I just posted an update🥰
Thank you for your video! Still I don't understand why you still have pressure headaches, I thought the stent would make them disappear. Maybe it takes a few more months before being totally operational? I don't know, I read it can takes around a year for people to feel REALLY better. Sorry if you mentioned it in your video, maybe I missed it. English isn't my native language :p anyway thanks for the update! I have my angiogram next week and I just can't sleep for two weeks now, I'm feeling so bad and anxious.
So the pressure headaches I have are extremely mild! They can last from 30 seconds to a day depending on what’s happening. No matter what, the stent has nearly eradicated the old pressure headaches I used to get, because the new ones are very mild. Also full recovery is a year, and I’m only 6 months recovered. So it’s not uncommon for the pressure to vary depending on the day. And for me, I always get a spike of pressure headaches during my period. The stent has made those pressure headaches much more tolerable. I hope this makes sense😊
Hi how are you ? Just following and watching your videos . How did everything started if you don’t mind asking you pls .
I have been suffering from headaches since I was 15 , but for the last 3 years they so intense and MRI have revealed I have had stroke and also a hypoplastic transverse sinus . I will get a Lumbar puncture pretty soon and I am scared because my doctor thinks I might have IIH . I recently got and open heart surgery too and I thought my headaches where going to disappear but that didn’t happen 😢.
I identify so much with you, I have also been diagnosed a few months ago, I am hopeful that soon I will improve. Do you still have the pulsatile tinnutus in your hear? I have that symptom and I despair a little
Overall no, occasionally I will have what I call “pressure headaches” and they usually last less than a day, and when I have those I have mild symptoms of pulsatile tinnitus
Hi there, I am new to your channel, new to Diamox, IIH, papilledema. My question is did you guys get back to your regular duties, jobs, driving while taking Diamox? I drive for a living, long hours, so I am concerned because it makes me lightheaded and drowsy. Wanted to know your experience...
I just posted an update where I explain this a little more, but overall I completely have my life back! The only things I no longer do are crazy rollercoasters, and I can get a little dizzy on elevators, escalators, or if I walk too fast up/down stairs
I think we all have different things but some things I have lost a lot of my eyesight due to this
Thank u sis for the info. God bless u in Jesus name Amen 🙏🫶
Hey I have another question. did you get the headaches after your lumber puncture? is there anything that you took for the pain mine seems to hurt soooo bad when I stand up or sit so I have to lay down to completely relieve it 😩😩
Yes I did! If you notice they are worse when standing it could mean a CSF leak so make sure you notify your doctor
My daughter was diagnosed last year. She has been off diamox for 3 months already. Doctor advising us to giver her the covid vaccine. We are a bit worried. Did you get the vaccine?
Did she get the vac?
Yes I did, and I have had no issues. Fully vaccinated, and have been since the vaccine was available to me
Is there any specific diet they told you to follow or no ? I was diagnosed with pseudo tumor too and I m waiting on my appointment to go back and get my lumbar puncture results read to me and see what my treatment is I was told by an eye doctor that they would put me on diamox like you.
No I wasn’t given a diet. Hopefully diamox works for you🖤
@@JaymeeCisneros thank you. & did they ever find out why you had that ? I haven’t been told yet one eye doctor told me I had to look in losing weight ( calling me fat 😐) but it’s weird bc I weigh the same for 2 years now and the only different thing i have done is change birth controls i have Kyleena IUD now for 6 months now and I used to be on depo for a year and a half
@@karlaloredo9719 So my neurosurgeon believes this may have been something I was born with, since I’ve had headaches/migraines since High School. But there is no way to really know what causes this🤷🏻♀️ I was also told by my eye specialist that I needed to lose weight, but my neurosurgeon surgeon feels that that would have never fixed my issue
@@JaymeeCisneros hopefully my neurologist can give me some answer when I go back and thanks for answering my question 🙂
We need to take the medicine for whole life .... Or for some months
Totally varies per person, I was able to get off meds due to my stent
I'm so nervous about getting my stent but excited to possibly not have to take medication because my doctor is saying I shouldn't need to. I hope I won't & everything goes well if it does come down to it. Did they have to cut your hair for your stent? This is all so depressing! I've so many questions & I'm trying not to worry this condition sucks!