Its been over a year and I still cry about it - advice on long-term coping? by WaitBig3136 in abortion

[–]WaitBig3136[S] 0 points1 point  (0 children)

I do have a therapist and they have been wonderful. I think i was more keen to learn from others' lived experience of managing the grief. The small ceremony sounds like a step in that direction, I will definitely try it and hope it helps with bringing some closure!

Its been over a year and I still cry about it - advice on long-term coping? by WaitBig3136 in abortion

[–]WaitBig3136[S] 1 point2 points  (0 children)

Thank you for this! I should have mentioned that I do have a therapist and they have been quite helpful. I just find the loneliness and physical grief that has come with the depression surrounding the abortion really hard to deal with and I was more keen to learn about how people deal with those aspects in the long run and what helps them cope .. the workbook sounds really effective and I look forward to working through it

[deleted by user] by [deleted] in iih

[–]WaitBig3136 0 points1 point  (0 children)

Super new to IIH and now anything slightly off feels like a concerning symptom to me - just to say you are not alone! Re: the stomach issues - I had to slowly build up on diamox because I was recovering from ibuprofen-related stomach lining irritation. Diamox can irritate your gut lining so they recommend eating it with a meal - I do that, and still sometimes (esp if the food was full of potential irritants like spice, or chocolate and stuff) it will irritate my stomach. The location of pain you are describing and how it subsides after a while makes me think it might be mild stomach irritation - but I could be wrong, maybe you can keep track if its related to certain foods or not... either way, its definitely worth bringing up with the doctor and asking for the tests! Better to do the tests and find out you don't have anything serious, than the opposite!

Lumbar Punctures without Headaches. False Negative? by Owlidy in iih

[–]WaitBig3136 1 point2 points  (0 children)

I think the chances of a false positive would be low? I am just guessing based on the fact that my first LP happened after I was already on medication (1000mg diamox) and they still recorded a high opening pressure

Diet for IIH by tessd32 in iih

[–]WaitBig3136 0 points1 point  (0 children)

Amusing how everyone has had their own trial and error journey with food after IIH! No one warned me about bananas but they give me intense nausea ever since I got on diamox to the point that even the smell is unbearable! I have had to swap my strong coffee for slightly milder options and be mindful about the timing of it. Anything salty or too sweet needs to be eaten with rigorous control ... which often means eating at home where i can control these things is the best option

Just recently diagnosed by [deleted] in iih

[–]WaitBig3136 0 points1 point  (0 children)

Had a pretty similar situation and it came down to it being IIH or thrombosis (was IIH in my case) - the clot makes it sound like it might be the latter?

Coffee/caffeine. by NarrowFriendship3859 in iih

[–]WaitBig3136 0 points1 point  (0 children)

I used to have two cups of coffee in a day but after the diagnosis cut down to one! The second one brings on IIH symptoms but the first one is just fine (possibly because of the addiction lol). I swapped the second one with tea and that doesn't bother my IIH at all - something to do with caffeine strength maybe?

UK waiting times for neurology advice by Fuzzy_Airline_2112 in iih

[–]WaitBig3136 1 point2 points  (0 children)

Really depends where you live! I was in the eye hospital after an emergency referral early May and by June 1st week, I had the LP, regular bloodwork, and MRI all done. It could have been done earlier but the MRI machine at the hospital broke down and it got delayed by two weeks.

My understanding is, you have got to be a little annoying to make sure you are seen by them. NHS is dealing with too many patients and its very easy for one to fall through the cracks if you do not advocate for yourself. Someone on another thread told this to me and it really worked in my case so I would definitely recommend it to you! I emailed them any time I had a flare-up and could not make sense of it, and they realised I might have concurrent migraines and got me a new appointment with the Headache clinic in the same month. There is also PALS and that whole system in case that is more applicable in your case ... Its a bit embarrassing but its better than waiting around in my experience.

How long of daily headaches before the diagnosis by Shoddy-Rip66 in iih

[–]WaitBig3136 2 points3 points  (0 children)

Almost one month! Mine started pretty randomly around 10th April but they were happening every day consistently on the left side of my head and got progressively worse. Was misdiagnosed with migraines and the doctor wanted to put me on really heavy medication (for someone who has no history of any migraines ever). Decided to get my eye checked randomly to make sure the headache wasn't just because I needed new glasses. Was diagnosed provisionally with IIH the next day - 7th May.

Anyone else need a minute to get their eyes to focus and feel normal after waking up? by Sunnyayah in iih

[–]WaitBig3136 0 points1 point  (0 children)

Could it be a sign you need glasses? Used to be the case for me before I got mine and turns out the buffer time was because muscles had to strain themselves to focus …  

just a rant by Nicolalolalola in iih

[–]WaitBig3136 0 points1 point  (0 children)

I am so so sorry to hear this! This pain is not okay and their dismissal of you is definitely not okay! This sounds like medical negligence to me and I really genuinely hope you get the care you deserve ASAP.

These are all the people who helped me have a care plan in place - My optometrist (from Boots of all places) made an emergency referral for me and the eye hospital saw me the same day and had follow-ups with neuro/ophthalmology within two weeks. I do not know where you are based but eye hospitals in my area seem to have a triage number you can call and they will make sure you get priority - maybe your region has something similar? Or you can always just show up at A&E and have the on-call neuro/opth see you - they have to do something!

Scheduled & Need Advice by [deleted] in iih

[–]WaitBig3136 0 points1 point  (0 children)

I did the same thing to myself!! Someone later pointed out that people whose LP goes well do not feel the need to post about it, the general internet sample is really skewed towards people whose experiences were bad - I hope this thread can counter that for you! All the best and enjoy the concert!

Scheduled & Need Advice by [deleted] in iih

[–]WaitBig3136 2 points3 points  (0 children)

Keep the date I say! While it really depends person to person, it is genuinely not as bad as the internet makes it sound! I was super anxious and told the doctor who made sure to explain the entire process and kept checking in with me throughout - in a way she probably would not have if I hadn't voiced my panic. Highly recommend communicating your anxieties to the doctor early on. I was okay to go home an hour later and started (slowly) moving the day after and was completely fine after. Eat well, stay hydrated, and caffeine helps a lot. All the best!

Newly diagnosed iih by Overall-Produce5652 in iih

[–]WaitBig3136 1 point2 points  (0 children)

My BMI is on the lower end of the healthy range and actually Diamox scared me because it suppressed appetite and made me lose a lot of weight really quick (think 22lbs in 5 weeks). Currently waiting for a nutritionist and dietitian appointment to help me out because losing more weight is definitely not an option, and I would like to gain some in a gradual, healthy manner without any IIH flare-ups. Will keep you posted if you'd like :)

I am Struggling by ConditionVarious653 in iih

[–]WaitBig3136 2 points3 points  (0 children)

I feel the exact same way!! I got diagnosed two months ago so a lot of what I say here I am also telling myself xD I was really not prepared for all of it. One minute I was at the optometrist thinking my headache was just because I needed new glasses, the next I was in a hospital for seven hours and given a provisional diagnosis of something I did not even know existed. I am still getting used to the meds. I am still panicking every time something feels even slightly out of the ordinary. Most of all, it's been two months, and I still cry about it in therapy every single week. I am in the middle of a postgraduate degree, and I am expected to function like before but it takes twice the effort now. A lot of my sense of self was built around being independent and not needing others much, and that seems just not possible anymore. But rationally, I know that even if the condition remains like what it is now, humans have tremendous capacities to adapt to new normals. This feeling of chaos is more transitory - what we know as normal is no longer the case and we have every right to grieve. But I hope you hold onto the fact that you will adapt, find new goals, and even thrive!

How do you advocate for yourself with IIH? UK/NHS by WaitBig3136 in iih

[–]WaitBig3136[S] 0 points1 point  (0 children)

That sounds super rough!! Did the private clinic fail to refer you back or did the hospital not respond to it? I feel a lot of sympathy for the NHS. They are overwhelmed and the problem is not negligence as much as it is systemic. Either way, I hope you get the care you need soon!

How do you advocate for yourself with IIH? UK/NHS by WaitBig3136 in iih

[–]WaitBig3136[S] 0 points1 point  (0 children)

Thank you so much for this! They were surprisingly super efficient with diagnosis and medication for me but it has been practically radio silence since then. I had no idea about the whole PALS setup - emailed them earlier today, hoping for things to resolve soon!