My story: Life with Bipolar, Anxiety and now IIH
I would like to share my story I wish it was more positive and uplifting but life isn't always filled with joy and happiness however I am hopeful that oneday when I retell my story it has a slightly more positive impact. For now I seek to enlighten and spread knowledge. I wanted to seek financial assistance but I have realized that it may take awhile before that happens. In the meantime I would like to share my story in the hopes of supporting other sufferers as well as educating those who may not know or who have incorrect perceptions and stigma attached to mental illness and who doesn't know anything about IIH as it is a rare illness and not alot is done around spreading awareness or knowledge so if I can enlighten only a few people that would be good enough. I understand that some people will not support or understand my mission but I have come to realize that something must be done to spread more awareness.
My life for the last 3 years seems to have revolved around Doctors, therapist and medication as well as stays in hospitals and clinics.
Within the year of 2019 things took a turn for the worst the sad part is its only just the 5th month of the year
Let me start from the beginning. In 2010 I was diagnosed with Bipolar mood disorder also known as manic-depressive illness,it is a brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out day-to-day tasks. ... Episodes of depression with mixed features (having depression and manic symptoms at the same time) are also possible.
My symptoms were under control from 2012-2016 when in November 2016 I was sent to the Crescent Clinic for Depression. I was off from work on Temporary Disability Leave until May 2018 I was then at work until October 2018 when I got injured at work from a fall and thereafter either due to the pain or stress caused fell into another deep depression and was once again sent to the clinic and have been off ever since. My Dr's have tried psychotherapy as well as medical treatment. The meds to date have not helped and only managed to increase my weight drastically which has caused many health concerns.
I have been experiencing really bad headaches since the end of last year as well as having vision loss which only intensified during the course of 2019 I have seen four GPS who said it was my meds and my Psychiatrist assigned blame to my anxiety that was not being properly treated. I went off most of my medication I was on and went on Venlafaxine which is more for anxiety than depression which explains my flare ups I was also still on 200 mg of Quetiapine which I had strong reservations about because of the side effect of weight gain.
I perservered going from Dr to to Dr until one Dr Irene Krawzyk identified that this is not normal at all. That was the 4 April 2019. She suggested I go see an optometrist who first identified the gaps and vision difficulty as well as the mass behind my eyes. That was 4 April 2019 since then I have had 2 CT scans and 2 lumbar punctures and saw a orthamologist Dr Michael Djan who found the mass behind my eyes he then referred me to a Neurologist who did the lumbar puncture to check if there was fluid on my brain and there was. A normal reading is supposed to be 20 or below but my first reading was 39 when back on the 25 April it was 42-43 she released the excess pressure both times.
So what I have been diagnosed with is Idiopathic intracranial hypertension (IIH). Idiopathic meaning that they do not know the reason for the Intracranial hypertension which means they can only treat the symptoms and not the actual problem as there is no one thing they can blame. Besides an increase in recent weight which I told my psychiatrist was a problem. Quitiapine has now been stopped. However after joining Facebook Support Groups and asking lots of questions some sufferers are not over weight and losing weight has not caused a change to there condition but I am hopeful.
Idiopathic intracranial hypertension (IIH) is a disorder of unknown etiology that predominantly affects obese women of childbearing age.  The primary problem is chronically elevated intracranial pressure (ICP), and the most important neurologic manifestation is papilledema which may lead to secondary progressive optic atrophy, visual loss, and possible blindness. Although IIH, pseudotumor cerebri, and benign intracranial hypertension (BIH) are synonymous terms in the literature, IIH is the preferred term.
Signs & Symptoms
The most common symptom is often an unbearably painful or frequent headache, sometimes associated with nausea and vomiting that is not relieved by medication. The headache often awakens the patient from sleep. Some patients are treated in the emergency room where a lumbar puncture (spinal tap) is done as a last resort, to temporarily ease the headache. Measurement of the opening pressure is encouraged during these procedures in order to assess for intracranial hypertension.
The diagnosis is also confirmed by detecting a high spinal CSF pressure reading, usually greater than 250 mmH2O or 25 cmH2O (200-250 mmH2O or 20-25 cmH2O is considered borderline high) and normal laboratory and imaging studies including CT scans and MRIs. There is generally a normal neurological examination as well, although abnormal findings may be detected on eye examination. The eye findings may be subtle, and not noted in an emergency room evaluation. It is not uncommon to misdiagnose a patient with IH as simply having a refractory migraine headache, and be treated as such. Unlike Primary IH, Secondary IH patients may have abnormal scans and laboratory tests.
Other common symptoms include transient altered vision, particularly on movement or bending over, intracranial noise (pulse synchronous tinnitus), stiff neck, back and arm pain, pain behind the eye, exercise intolerance, and memory difficulties...
We spoke to the surgeon yesterday who scared the socks off me he was straight to the point about it and did confirm that there is a possibility of permanent vision loss. And described placing a shunt surgery – a thin, flexible tube is inserted into the fluid-filled space in your skull or spine to divert excess fluid to another part of your body.
The success rate of the shunt is not that high and could be left with worst symptoms. So we are first going to give the medication a good try. Although after chatting to fellow IIH sufferers I am contemplating it. There are many with positive stories as well as those with negative stories and those who needed to go back for revisions 2 or more times afterwards but once they get it right it can be a game changer and it can assist with the eyesight loss. Though when we spoke to the Neurosurgeon on 26 April 2019 he said that there was some risks to the surgery and would suggest it as a last resort as symptoms may be exasperated as well as sepsis to the wounds and other. So we going to see if medication will help with managing the fluid build up and then also lumbar puncture when necessary. I have to watch out for side effects though and if it gets bad I must inform my Doctor.
So what other treatments available:
losing weight if you're overweight – this can often help reduce symptoms and may sometimes relieve them altogether. I am not sure of this as people in the support groups have loss weight and still experience symptoms and some were never overweight to start with. So this put anybody at risk.
stopping any medication that may be causing your symptoms. I have stopped taking the Quetiapine as it is a well known fact that it causes major weight gain. Why it's on the market I do not know.
medication to remove excess fluid from the body (diuretics). I am currently on Azomid and Topamax.
medication to reduce the production of cerebrospinal fluid in your brain
a short course of steroid medication to relieve headaches and reduce the risk of vision loss. This I can't take as steroids cause weight gain.
regular lumbar punctures to remove excess fluid from your spine and help reduce the pressure on your brain. I have had 2 this month already and the way I feel now I will most certainly need more. My Dr first said one will help now she says with some patients one is not enough. Which I can understand since this is not your everyday day illness and not alot is known about it. My Neurosurgeon told me he doesn't like this illness because it doesn't have an solution, people just have to suffer.
The lumbar punctures are no fun at all and it hurts for a few days after my back and legs are sore and my head still feels like it's going to burst. All I can do is bed rest and I can't even watch TV because it hurts my eyes which in turn causes my head to hurt more and obviously social interactions are very limited. I have no idea when I will be able to return to work because of both these illnesses not being "managed" as yet. The vision loss is a problem as I can't do much when I can't see, my vision is blurry or there are dark spots in my vision. It's quite scary and I have this constant worry that I may wake up and not be able to see.
I am trying hard not to fall into the deep pit of despair but I literally cannot afford to have 2 chronic illnesses as the medical aid is 1. Exhausted and not covering Dr bills and other tests 2. There are co-payments in hospital for certain procedures and 3 The medical aid refuses to cover any of my meds as firstly its exhausted and secondly IIH is not covered by Medical aid option at all. These meds don't come cheap and I can't not take them because it will make my symptoms worst. So I am forced to buy them. I'm hoping my company will allow me to cancel our staff medical aid and join a better one as I simply cannot afford all of this and it's putting alot of pressure on me and my husband.
So because my medical aid is exhausted I need to pay cash for all my therapists as well as for my current Dr's and then there are bills outstanding for co-payments, therapy sessions and blood test. Yes nothing seems to be covered the medical aid they denies claims left, right and centre. I must however see a therapist and take my meds as a condition of my Temporary disability and also to keep my condition under control or atleast try to.
It is for this reason I am seeking assistance as we are literally drowning and still have lots of appointments in my future.
I am trying to not let this get me down and fight the good fight but I am honestly scared of what the future holds. Being in pain 24/7 is also no joke and has limited my quality of life significantly. I don't quite think the doctors understand the level of pain you are in. I try to explain it as a man sitting on my head knocking on it all the time. Over the counter painkillers don't make a significant difference to the pain and it's hard to fall asleep because of the constant nagging pain and my anxiety is also causing my mind to run at speeds I can't keep up with so I am physically tired but my brain won't switch off.
To top everything off I had a hernia repair on 18 April 2019 it was supposed to be 45 minutes but I was in surgery for 4.5 hours. I woke up screaming in agony after the operation I don't know which pain was the cause I just remember crying like a baby. My Dr joked that his never operating on me again because of my low pain threshold which is totally new to me because I am always being told my tolerance is high.
So these are the current health issues I have : IHH, Bipolar mood disordersorder, Generalized anxiety, Metabolic syndrome, PCOS, Anemia and Insomnia.
Symptoms being experienced:
Visual impairment: Temporary blindness, blind spots, no peripheral vision, black spots, ect
Neck and shoulder pain
Pain in eyes
Ringing and whooshing sound in ears
Sun/ light sensitivity
Lack of confidence
Low self esteem
Fear of public spaces
Fear of being touched, knocked, spoken to etc in public
I can only handle small groups of close friends and family
And the list probably goes on.
I am tired of suffering in silence because mental illness makes them uncomfortable or they just not educated enough. I can sometimes not believe the ignorance from people when it comes to mental illness and it made me feel ashamed for along time because people are so insensitive and biased. Mental illness and the stigma attached needs to be addressed in our society as well as our Employers and co-workers. I have met some of the most most amazingly strong, kind and friendly people in my stays at the clinics and they are there because something or a few things triggered them. And there are some who are so strong that let people know where they are and they get support from family, friends and co-workers. Then there's people like me who doesn't tell anybody except those who need to know or who will look for me. The thing is sometimes people judge you and say you not strong enough or your faith weak these people do not know how much it has taken for you to break or how it feels to be completely broken and feel all alone while surrounded by people. They don't see you prying and crying for some relief from the pain and a break in the challenges occupying your life. How much strength and courage it takes to face everyday fighting for ever bit of strength you can muster and how exhausted you are when you get home yet your mind won't stop racing because it's just how you wired, if you lucky you get 4-5 good hours of sleep where you dreams isn't also torturing you and you wake up in a cold sweat. And upon waking up you have to get your bearings together because you realize it was only a dream. Constant torture day in and day out. Then you do the work put in the effort and something happens and everything just comes rumbling down again and you are left in a cold dark place with all the broken pieces once again to mend and sometimes you just feel like giving up and giving into the negative voices in your head but then you find the strength to carry on. You have to believe that this is not all in vain and that there is a light at the end of the tunnel. You have to accept that you will never be the person you were and also that people may not like the person you have become. That's life though.
So in conclusion the whole point of this was to raise funds for medical expenses as well as to live my clean lifestyle and just to carry on. Even groceries, a voucher etc would do However I have been turned away by companies atleast those who have had the decency to reply and some just haven't replied but it's OK because I think it is more important to spread awereness. Hopefully medical aids can direct more funds to people suffering from chronic conditions in general because none of this asked for it. Who wants to live a life dependent on medication? Who wants to go regularly to the Doctor and hospitals? Not a single soul. Life is already hard suffering with these conditions it shouldn't be made worst by medical bills and lawyers calling or messaging you. To the pharmaceutical Companies why are these meds so expensive it should surely be accessible to the general public without making them broke?
Lastly I would like to thank the friends and family that have been amazing support and to my Husband Jaye marrying you was the best day of my life you have been my number one supporter and caregiver throughout this. Your love has carried me through many dark hours and you are just amazing thank you for being in this journey with me and going to all the Dr appointments, lumbar punctures, stressing while I'm in surgery, staying with me at the hospital and therapy sessions and more. You all I could ever want and need thank you for your constant words of motivation and encouragement. Without you in my life I don't know where I would be. I thank the Lord everyday for sending you me.
Thank you for your time in reading this I hope I shed some light on these illnesses.
Please see my FB page. https://www.facebook.com/groups/1070738849716585/